Kathy Charmaz - Good Days, Bad Days - The Self in Chronic Illness and Time-Rutgers University Press (1991)

THE SELF IN CHRONIC
ILLNESS AND T
Kathy Charma
$24.95
D m
B
Millions of Americans suffer chronic illness, but
what is life really like when you are chronically ill?
How does having an illness affect one's self-con-
cept? How does the passage of time give rise to
meanings of illness and self? How does chronic

illness affect friends and family?
Kathy Charmaz takes a fresh look at the
experiences of people with serious chronic illnesses
such as cardiovascular disease, cancer, lupus, em-
physema, multiple sclerosis, and arthritis. She enters

their worlds and allows us to see their experiences,
to understand their feelings, and to empathize with

their cares. She tells how chronically ill people
interpret their experience and reconstruct their
lives. Through their stories she makes visible what

happens to a self that is made vulnerable. Good
Days, Bad Days poignantly reveals what it means
to experience disruption, loss, and growth.
Charmaz captures the predictable, yet often unex-
pected, crises and changes occurring in adult life.
Looking at the thoughts, feelings, and actions of
men and women with chronic illness provides a
mirror that reflects ourselves anew.
(continued on back flap)

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Good Days, gad pays
Good Days, gad Qays
The Self in Chronic Illness and Time
Kathy Charmaz
Rutgers University Press

New Brunswick, New Jersey
—
The following publishers have given permission to quote from copyrighted works:
From Episode: Report on the Accident Inside My Skull, by Eric Hodgins. © 1963 by Eric
Hodgins. Reprinted by permission of Atheneum Publishers, an imprint of Macmillan
Publishing Co. From Limbo: A Memoir About Life in a Nursing Home by a Survivor, by
Carobeth Laird. © 1979 by Carobeth Laird. Reprinted by permission of Chandler &
Sharp Publishing, Inc. From Starting Over, by Ernest Hirsch. © 1977 by Ernest
Hirsch. Reprinted by permission of Christopher Publishing Co. From Multiple Sclero-
sis: A Personal View, by Cynthia Birrer. © 1979 by Cynthia Birrer. Courtesy of Charles
C. Thomas, Publisher. From The Magic Mountain, by Thomas Mann, trans. H. T.

Lowe-Porter, © 1927. Reprinted by permission of Alfred A. Knopf, Inc. From "Termi-
nal Cancer and the Coda Syndrome: A Tandem View of Fatal Illness," by Lois Jaffee
and Arthur Jaffee, in New Meanings of Death, ed. Herman Feifel. © 1977 by McGraw-
Hill, Inc. Reprinted by permission of McGraw-Hill, Inc. From "Resolution: The Final
Life Task," by Naomi Fiel, Journal of Humanistic Psychology 25, no. 2. © Spring 1985
by Sage Publications. Reprinted by permission of Sage Publications, Inc. From "I Get
So Lonely Out Here," by Maria Goodvage, San Francisco Chronicle. © 1988 by San
Francisco Chronicle. Reprinted by permission. From It's Always Something, by Gilda
Radner. © 1989 by Gilda Radner. Reprinted by permission of Simon & Schuster, Inc.
Credits Continued on Page 312.
Library of Congress Cataloging-in-Publication Data
Charmaz, Kathy, 1939-

Good days, bad days : the self in chronic illness and time / Kathy
Charmaz.
p. cm.
Includes bibliographical references and index.
ISBN 0-8135-1711-7
1. Chronically ill —Psychology. 2. Self. 3. Chronically ill
—
United States Interviews. I. Title.
R726.5.C49 1991
155.9' 16— dc20 90-28864
CIP
British Cataloging-in-Publication information available.
Copyright © 1991 by Kathleen C. Charmaz

All rights reserved
Manufactured in the United States of America
Contents
Preface vii
1 Introduction 1
Part I Experiencing Chronic Illness 9

2 Chronic Illness as Interruption 11
3 Intrusive Illness 41
4 Immersion in Illness 73
Part II Problems in Everyday Life 105

5 Disclosing Illness 107
6 Living with Chronic Illness 134
Part III Illness, the Self, and Time 167

7 Time Perspectives and Time Structures 169
8 Timemarkers and Turning Points 196
9 The Self in Time 228
10 Lessons from the Experience of Illness 257
Epilogue 266
Methodological Appendix 271
Notes 279
Glossary 287
References 293
Index 307
Preface
Having a serious chronic illness often crystallizes vital lessons

about living that otherwise may remain opaque. For many
years, I have pondered over what people learn through experi-
encing chronic illness. I have long noted that having a lengthy,
uncertain illness affects people's emerging self-concepts. I also
have come understand that studying the experience of illness
to
illuminates elusive, evanescent meanings of time. A disabling,
unpredictable chronic illness rips apart taken-for-granted daily
routines. Many ill people find themselves relating to time in
new ways. Some of themdeeply about their lives and
reflect
about time. Their thoughts, feelings, and actions about them-
selves and about time clarify experiences that occur more gener-
ally throughout life. In this book, I look at how men and
women make sense of having a serious chronic illness. I link
their interpretations to their experiences of time and show how
experiencing time provides latent lessons that foreshadow a
new concept of self.
The genesis of this research is both autobiographical and intel-
lectual.Ill family members, friends, and colleagues have all
taught me about living with serious chronic illnesses. After

graduating from college, I worked as an occupational therapist
with patients who had physical disabilities. Despite the glow-
ing words of rehabilitation rhetoric about maximizing human
potential, I soon learned that my real task was to try to teach
patients ways to manage at home that would keep them from
the nursing home door. I also discovered that relearning the
trivial awesome hurdles, not simply in
tasks of self-care posed
time and energy, but in reconstruction of the self. In those
tasks, new, and often disquieting, meanings of self emerged.
vii
VIII — Preface
Some years later, my interest in chronic illness and self re-

sulted in a doctoral dissertation on those topics that focused on
time and identity. Several of the ideas and a few of the inter-
view quotations in this book come from that work. My disserta-
tion research was also primarily based upon qualitative inter-
views, as is this current work. For the dissertation, I conducted
55 interviews with 35 chronically ill people. But I felt that those
interviews just pointed the way for exploring issues about time
and the self in chronic illness, rather than capturing them. In
addition, the referrals for the study came almost exclusively
from physicians who had close contact with those patients.
After completing my dissertation, I wanted to pursue my inter-
est in the experience of chronic illness, but I wished to gather
more complete and richer data, and I wanted to include people
with chronic illnesses who were less tied to professionals and
medical care. Subsequently, I conducted 115 additional inter-
views of considerably more depth with 55 new respondents.
Among them were several people who had not consulted physi-
cians for years.
My research here differs from most interview studies because I
talked with some participants over a number of years (5-11). It
also differs in that have had informal conversations with many

I
of them as well as intensive interviews. Further, I have also

interviewed twenty caregivers and providers and have amassed
a collection of published and unpublished personal accounts
and anecdotes about having a chronic illness. All these materials
are reflected in the book, although I rely most heavily on the
interview data that I have collected over the past eleven years.
The book focuses on self and time. Although earlier works on
the experience of illness offer insights into both, they usually do
so in the context of managing the illness, which is but one of my
concerns here. My purposes include: 1) to look deeply into the
experience of chronic illness, starting from the perspectives of ill
people themselves, 2) to explore different ways that people ex-
perience chronic illness and to examine their implications for
the emerging self, and 3) to show how the struggle for control
over illness and for control over time is a struggle to control the
defining images of self.
This work fits under the general rubric of social construe-
Preface « IX
tionism and interpretative social science; I examine how people

with chronic illness create meanings of their illnesses and of
themselves. My background in sociological social psychology
and symbolic interactionism provides the theoretical underpin-
nings for this study. In medical sociology, the works of Fred
Davis, Barney G. Glaser, Julius Roth, Anselm Strauss, and Ir-
ving K. Zola have most influenced me, and in social psychol-
ogy, the ideas of Herbert Blumer, Norman K. Denzin, George
Herbert Mead, and Ralph Turner have permeated my thinking.
Anselm Strauss served as my dissertation chair; I gained much
from his knowledge and wisdom.
To offer the reader some insight as to how people respond at
different points in their illness and problems, I have
to different
assigned fictitious names to twenty-seven men and women and
provided statements from them throughout the book. I have
tried to record what people told me without revealing either
their identities or those of other individuals whom they men-
tion. With great reluctance and with much prodding of review-
ers, I have shortened my interview excerpts and edited them
slightly. Left to my own devices, they would have stood as is
with every "ah/' "um," and "you know" faithfully recorded.
In Part I of this book I present three ways that people experi-
ence illness: chronic illness as an interruption, intrusive illness,
and immersion in illness. Each way of experiencing and defin-
ing illness has different implications for self and for meanings
of time. Those meanings become stark when ill people must
deal with the logistics of disclosing illness and living with it,
which I cover in Part II. Meanings of time congeal for people
with serious chronic illness and become attached to self more
visibly than for other adults. In Part III, I examine meanings of
time structures and the ebb and flow of time perspectives. I also
include a description of timemarkers and turning points. Then,
I specify the temporal conditions experienced during chronic
illness that lead to anchoring the self in the past, present, or

future. I conclude with a discussion of the lessons that we can
learn from studying the experience of illness. These lessons
focus on the effects of illness upon the self and the related
policy implications of the research. A methodological appendix
describes the research participants and outlines the research
X m Preface
procedures. A short glossary of specialized medical and service

delivery terms included at the end of the book.
is
During my work on this study, I have presented numerous

papers at professional meetings on these topics. I am grateful to
the many colleagues who expressed interest in my work and
encouraged me to complete it. The book was written in small
increments and large jumps, when I could fit it around my
work. I had written drafts of the first two sections of the book
and part of the third section as of three years ago. As I revised
the manuscript, I checked my ideas through further interview-
ing. I also came across works by Kathleen Lewis, Sefra Kobrin
Pitzele, Cheri Register, and May Sarton, all of whom had
chronic illnesses. Their experiences affirmed a number of ideas
that I had already developed —sometimes startingly so, such as
May Sarton's poignant longing to regain her lost self. I include
occasional quotes from these authors to illustrate my points.
But I developed the analytic framework for the book from mate-
rials gathered earlier.
Steve Charmaz, Adele Clarke, Dave Hoffman, and Katie
Torgensen were particularly helpful in locating people to inter-
view. Special thanks are due to the members of my writing
group, Joyce Bird, Anna Hazan, Marilyn Little, and earlier,
Adele Clarke, Gail Hornstein, Barbara Rosenblum, and Susan
Leigh Star, for their interest in my work and for their critiques of
chapters. Fran Bedingfeld, Steve Charmaz, Carol Engelbrecht,
and Irving K. Zola also commented on individual chapters; Pat-
rick Biernacki has been a valuable methodological consultant
over the years. I have talked at length about these ideas with
Carol Engelbrecht, Lyn H. Lofland, and Mona Partlo. Their en-
gaging responses spurred my thinking. I am much indebted to
Norman K. Denzin, Lyn H. Lofland, Gottfried Paasche, and Jane
Prather, each of whom read the entire manuscript, discussed it
with me, and offered helpful remarks on it.
For a faculty member with heavy teaching and program admin-
istration assignments, conducting extensive research is some-
thing of a luxury. Thus, receiving two grants from the Faculty
Incentive Grant Program at Sonoma State University helped
enormously and expedited this work. A sabbatical leave af-
forded me time to edit the manuscript. My writing has benefited
Preface m XI
from thoughtful comments and careful readings by David

Bromige, William de Ritter, Helen Dunn, and, especially, Gerald
Rosen of the English Department at Sonoma State University. It
has been a privilege to work under their tutelage. I am grateful to
the School of Arts and Humanities at Sonoma State University
for inviting me to teach courses on writing, which prompted me
to learn new ways of handling it. Mariana Chavez, Linda Cirk,
Nancy DeLong, Linda Gaede, and Lillian Lee helped with cleri-
cal assistance at various stages of the work. I am fortunate to
have worked with a professional editorial staff at Rutgers Univer-
sity Press, and I thank Marlie Wasserman and Kate Harrie for
their efforts to produce the book.
Over the last ten years, I have discussed some of the ideas in
this book with students in the Gerontology Program at Sonoma
State University. They have always offered stimulating and sup-
portive responses to my research; I thank them. My greatest
debt is to the people whose stories appear in the following
pages. I hope the reader senses their remarkable candor and
the openness of heart and mind with which they talked about
their lives.
In memory of Loraine Patnode Calkins
1
Introduction
I'm kind of up and down, but mostly better than I have been. This is
like ... a real strong summer for me. And, I have bad times. .If I . .
overdo too much, but if I take it easy and

and I don't do I relax
anything like lately it's just been like maybe a day and then I'm
. . .
like a battery and I get plugged in and then I'm ready to go again. And
a lot of my symptoms, they're kind of on and off and sporadic. .
—
. .
One thing that is really for certain if I don't get my rest, I'm defi-
crummy. And let's see, this year I
nitely feeling really, really had . . .
two bouts with about a week to where

this that's lasted it was real . . .
difficult for me to even come down the stairs and [go] back up. But,
with the sleep apnea and the medication on sleeping, and then I think of
my illness. I think, "God, I could take this and I might not wake up in
the morning." But then I think, "Well, if I don't take this, I'm not
going to go to sleep. " And if I don't go to sleep, I'm going to feel lousy,
so . . .
Progressive gains. Plummeting losses. Plateaus. At forty-

nine, Nancy Swenson experienced each phase during her eight
years of debilitating symptoms from carcinoid tumors. When
Nancy was very her illness drained her of energy, pulled
sick,
her into her physical self, obliterated her ability to concentrate,
impaired her vision, and robbed her of sleep. Increasing her
medications resulted in more symptoms, including lethargy and
depression. From an overwhelming physical dependence to an
independence that belied her condition, Nancy Swenson experi-
enced the good days and bad days that marked her illness.
After two years of contesting negative decisions on her appli-
cation for a disability benefit through Social Security, Nancy
received a temporary benefit. She said:
1
2 m Introduction
But then they evaluated me in a year. They were almost . . .
going to take it away from me and then they talked to one of

—
my my counselor actually — and she explained to them
. . .
[that] I can't be something I'm not. I can't go in to [see] a doc-

tor .. without being presentable.
. Then he's going to look
. . .
at me and say, "God, she looks healthy enough, nothing wrong

with her." And my counselor explained that I don't enjoy having
this, and it's kind of demeaning for me that I'm not able to go out
and participate and [be] in a full-time job and take care of my-
self. ... So they sent me a letter saying that they will keep me on
Social Security and SSI for three years, but then, at that time they
will reevaluate me again to see where I'm at. So I just figure I'll
take it a day at a time and cross that bridge when I come to it.
Living with a serious illness takes effort and devours time. It

also means overcoming stigmatizing judgments, intrusive ques-
tions, and feelings of diminished worth. Nancy Swenson tried to
plan her life to fit her illness. That meant balancing exertion with
rest, simplifying daily tasks, and reordering time commitments.
If she did not, she got sicker —
sometimes much sicker. Nonethe-
less, others still expected her to function and to keep her house-
hold together. Nancy's serious episodes of illness caused havoc,
because, like many women, she was the center of an extended
family. She cared for her eighty-two-year-old mother who had
Alzheimer's disease and helped several adult children who
moved in periodically. Her unacknowledged illness shaped
daily life for her mother, her children, her mother's attendants,
and, sometimes, her tenants.
The structure of medical care extends its reach into the
depths of private life. 1 Nancy had signed her property over to
her children years ago, which made her eligible for Medi-Cal,
the California Medicaid program. She had virtually no choice of
physicians —
she went to the only physician in her area who
accepted Medi-Cal patients. Because she might need medical
care —
lots of it —
in the future, she could not afford to lose her
Medi-Cal status. Not for a man. Not for a marriage. Thus, the
economics of medical care figure in relationship ethics. Nancy
said, "I can't possibly ever get married because I'd lose Medi-
Cal. No insurance company in this whole world would touch
me unless I went to work for a corporation. And then they
. . .
—
Introduction §3
probably wouldn't take preexisting illnesses. ... I can't get
married because I could wipe somebody out. And I had a
. . .
fellow I was seeing, and he proposed and so I had to quit

. . .
seeing him."
Not only does the structure of medical care shape personal
decisions, but also the experience of illness leaves its imprint
upon feelings, actions, and meanings of time. Having an illness
and being a caregiver shaded Nancy Swenson's views of love,
marriage, and her future. Because she had received so little
acknowledgment of her illness, being with an attentive man
gave her comfort. Yet knowing that her life was foreshortened
had caused her to reevaluate how she used whatever time she
had. Before she became ill, she had worked toward future
goals. Afterwards, she sought valued moments and good days
in the present. Further, she did not want to face years of
caregiving again as her health declined. She commented:
The last fellow was very doting . . . but he wanted to live my life
for me. ... He wanted me to rent my place out, to move in with
him, get married, ah; he'd get a hot dog stand; I'd manage it. . . .
And I'm thinking, "Wait a minute; that's not what I want at

all." .And another thing, the man had a heart problem. And I
. .
thought to myself, "Gosh, what if, you know, he had a stroke? I

could end up taking care of him like I'm taking care of my
mother." And no way.
Though Nancy Swenson had little acknowledgment of her

illness or help for it, some people demonstrated their concern
for her. Her son paid several large bills that she could not
handle. A
disability rights counselor helped her appeal the
negative decision for receiving a disability benefit. Two friends
whisked her away occasionally for a care-free weekend.
Later, Nancy's mother became bedridden. With the help of
attendants and equipment, her mother's care became far easier
than when she was ambulatory. Meanwhile, Nancy's condition
plateaued. She came to a sense of resolution about her illness
and her life: "I do find now that this whole thing has brought
—
and with my mother has brought so much peace into my
life."
4 hb Introduction
Life was not so peaceful earlier for Nancy Swenson, as will

become evident in later chapters. She had to contend with hav-
ing a disruptive mother, a chaotic household, a difficult foster
daughter, troublesome tenants, and little money in addition to
being exhausted, in pain, and, sometimes, incapacitated.
From getting through the day to dealing with the inequities
of medical care, living with chronic illness can result in unend-
ing knotty problems and unforeseen hardships. Chronic illness
can set people apart from others and take over their lives. None-
theless, most people live with their illnesses rather than for
them (Conrad 1987; Schneider and Conrad 1983). Often, they
try to keep illness at the margins of their lives and outside the
boundaries of their self-concepts. 2 Though sometimes people
can do that, at other times they must struggle to do so, and at
certain points they cannot.
In this book, look at the crossroads between living with
I
chronic illness and constructing a self. I study the private face
of a public problem —
what illness and disability mean to people
who have them. Their meanings are imbedded in experiences
of time. More than allowing time for illness, losing time to it, or
reducing time commitments because of it, being ill gives rise to
— —
ways often new ways of experiencing time. Through inter-
preting elusive moments, critical minutes, lengthy hours, and
slow stretches of time, people make sense of what their ill-
nesses mean for their emerging selves. Hence, both meanings
of illness and self take root in subjectively experienced dura-
tions of time.
Meanings of illness and self shift and change as illness pro-
gresses or recedes into the past. Further, the type, quality, and
quantity of help that ill people have available to them affect how
they experience time during their illness. Although some ave-
nues for help might exist, many ill people neither know about
them nor have access to them. Instead, they live with illness with
littleinformation, help, or even, psychological support.
Living with serious illness and disability can catapult people
into a separate reality —
with its own rules, rhythm, and tempo. 3
Time changes — drastically. A once calm day with a smooth
schedule or a taken-for-granted routine now teeters with ups
Introduction — 5
and downs. A "good" day permits an even schedule and is sa-

vored. A
"bad" day forces attending to immediate needs and
may be dreaded. Good days and bad days lend new meanings to
the present and future and shade memories of the past.
Illness can become an odyssey to unfamiliar emotional and
social terrains filled with passion, pain, and renewed purpose. 4
Ill people and their intimates enter worlds with concerns, feel-
ings, and problems removed from conventional adult worlds.

Yet for lengthy periods of time, many people live with a serious
chronic illness and move between being immersed in it and
keeping it contained. As they do so, their priorities change, and
often along with them, their perspectives. These changes flow
from experiencing illness and, simultaneously, inform it. What
began as an alien reality, after months or years, may come to
feel natural, unalterable —right. What may have once devas-
tated someone can become a path to developing confidence,
competence, and compassion.
Though living with chronic illness may mean entering and
being swept away by a separate reality, more adults enter it as
they age and as the incidence of chronic conditions increases.
For that reason, we need to explore the experience of illness and
to give voice to people who have it. My analysis stresses disrup-
tion, immersion, packed schedules, slowed moments, and prob-
lematic relationships, all issues in contemporary life. If so, then
why study only people with chronic illnesses? Because the
stakes for them are so high. Their gains are often small, but their
losses are great. Studying the experience of chronic illness pro-
vides lessons about suffering and loss and about occasional won-
drous moments.
Having a chronic illness means more than learning to live
with it. It means struggling to maintain control over the defin-
ing images of self and over one's life. This struggle is grounded
in concrete experiences of managing daily life, grappling with
illness, and making sense of it.
The ill people

significance of the experiences of chronically
transcends chronic illness. Other adults who
experience loss
and crisis will find strong parallels with the experience of ill
people. They, too, struggle with putting their lives together
6 ~ Introduction
after disruption, controlling time, creating continuity with past

selves, reconstructing new selves, devising timemarkers, noting
turning points, and locating themselves in the past, present, or
future. And so do people who have experienced divorce, acute
grief, job loss, or who attempt to recover from addiction or
abuse. Studying the experiences of chronically ill people pro-
vides a window for observing duress and change.
What does it mean to have a serious chronic illness? How does
chronic illness affect the sense of self? What is time like during
sudden crises, uncertain outcomes, long convalescences, and
daily regimens? How do ill people make sense of timeouts for
illness, slowed time for symptoms, added time for regimens,
and crisis time? What mirrors of self does illness provide? And
when do ill people take note of them? When do they resist accept-
ing the images mirrored in illness? When do they accept them?
How do feelings about illness become melded to periods of time,
and moreover, to self? In which ways does illness provide
timemarkers that locate the self in time? I address these ques-
tions in the following chapters.
In this book I look closely and deeply at the experience of
having a chronic illness. I do not intend to trace the experience
through particular men's and women's lives, but I do aim to
give some sense of the general properties of that experience. 5
Certainly the results are tempered by the data I have collected,
my interest in time and social psychology, and my awareness of
what it takes to plan and to complete daily tasks that have
become much harder and take much longer.
As a work in interpretative sociology, this book provides
views from two different levels of interpretation: first, from
men and women who reflect upon past experience or relate
present experience, and second, from the sociologist who stud-
ies,synthesizes, frames, and creates an interpretation of these
experiences. Moving between these levels results in choices
and emphases (Denzin 1989; Geertz 1988; Marcus and Fisher
1986). I attempt to provide statements from people who have
chronic illnesses to illuminate their lived experience on which
the analysis rests.
To observe how chronic illness affects the self, we must look at
the degree to which illness impinges upon ill people's everyday
—
Introduction 7
life — their work, homelife, free time,

if they have it. In turn, how
illness impinges upon them depends upon the structure of their

lives and when and how they define illness. Moreover, both the
degree that illness impinges and the social context surrounding
it delimit the amount of control an individual can have. And that
control is pivotal for the shaping of self.

Subsequently, in the following pages, I tell a story about experi-
encing chronic illness. Strands of the story are taken from frag-
ments of ill people's thoughts, feelings, and actions, and then
woven together with a sociological thread. The story reflects the
social setting, times, and culture of the people whom I studied.
Thus, themes of individual choice, responsibility and blame —
might resound more strongly here than in other parallel studies
because these themes have resonated within the holistic health
beliefs and practices to which a number of my respondents sub-
scribe (cf. Crawford 1986; Lowenberg 1989).
Still, what I weave together here is a sociological story.
Though I have tried to present ill people's experiences from
their viewpoints, the rendering of them and the analytic frame-
work in which I my own. 6 In telling the
couch them remain
story, I portray feelings as well as thoughts and actions, dilem-
mas and doubts in addition to hopes and happy endings. 7 To an
extent, I have entered the worlds of chronically ill people and
have compiled their stories to tell this sociological story.
Experiencing Chronic
Illness
People experience serious chronic illness in three ways: as an interrup-

tion of their lives, as an intrusive and as immersion in illness.
illness,
The disease process usually remains elusive to them, and an illness

trajectory (Strauss et al. 1984; Corbin and Strauss 1988) might seem
abstract and removed. Rather, from their perspectives, illness disrupts
their lives; it intrudes upon the day —
frequently each day; it engulfs
them.
Different relationships to time flow from each way of experiencing
illness. Achanged relationship to time and a changing body bring
latent lessons about the developing self. Meanings about illness reflect
the qualities of lived time, how much time illness takes, when it takes
time, and what other time constraints press upon the person.
In Part I, I describe experiencing chronic illness as interruption,
intrusion, and immersion. Some people experience illness in a straight-
line progression, although that progression may take years. Their lives
are disrupted — temporarily, they hope and often believe. Time goes on
but symptoms remain. Symptoms, and, should they adopt them, regi-
mens, cut into the day. Good days spawn hopes. Bad days dash them.
More frequent bad days make valued pursuits difficult or impossible.
Worlds narrow and health fades. Life becomes founded on illness when
people cannot handle their former responsibilities. Their days change.
Days and weathering compli-
dissolve into maintaining illness routines
cations —
and crises immersion in illness.
The movement from initial interruption to complete immersion usu-
ally occurs with both bumps and jolts and long smooth stretches.
During those smooth stretches, illness remains in the background of
people's lives. They may almost forget that they have a serious
9
10 ^ Experiencing Chronic Illness
chronic illness. But as the disease progresses, illness comes into the
foreground again.
Not everyone experiences a linear progression of illness. Some people
define intrusive symptoms long before they have a major disruption or
crisis. Thus, their illnesses start in the background of their lives and
move stealthily into the foreground as they demand more attention and
time. Other people catapult from an initial interruption straight into
immersion in illness routines. They suffer through a crisis and then
find themselves at home sick — very sick. Similarly, a crisis may signal
the beginning of a founded on illness. If so, these people find that
life
their health prohibits them from returning to their former positions and
that they cannot create new niches for themselves. They slide into a life
founded upon illness.
Certainly medical treatment can alter how someone experiences a

chronic illness. Technical advances may permit keeping an intrusive
illness in the background of life. Conversely, iatrogenic effects can
bring it into the foreground.
Experiencing illness as interruption, intrusion, or immersion de-
pends upon the person's definitions of the experience. Illness cannot
exist without such definition, for its meaning derives from the person's
bodily feelings, thoughts, and sentiments. In the subsequent chapters,
I look at the experiences that influence ill people's definitions.
s
2
Chronic Illness as Interruption
I just cried and cried. And I think finally what got me out of this
[feeling that she could not cope with having Hodgkin's lymphoma], one
lady really helped me a lot . . . she had been sick in her life before. . . .
She was so infected she almost died and I thought, "If she can go
. . .
through that at such a young age, I can do this [cope with the treat-
ments] . . . that's mentally what went click, click, click in me.
I said [to myself], go through the steps [of radiation
"I'm going to
treatments for Hodgkin's lymphoma]; I'm going to drive myself to

Garden General Hospital; I'm going to lay under the radiation beam for
a minute and a half every day; I'm going to put my clothes on; I'm
going to go home. I'm going to get done with this; I'm going to do it,
finish it, get well, and get on with life. " And from that minute on,
that's what I did. Really I did. I just said, "That's it."
From shock to grief. Then resolve. Gloria Krause recounted

her responses to her diagnosis. Devastated by the diagnosis and
the subsequent surgery, she had resisted having radiation treat-
ments. Hodgkin's lymphoma had taken over Gloria Krause'
life. Everything had changed. Until she heard the other
woman's story, she had languished in sorrow and wavered
about going through the treatments. Afterwards, she defined
her illness as temporary and resolved to recover.
Several other crises followed, each with major surgery. Then,
the second episode of Hodgkin's:
I went through so much and then happen again

for this to . . .
[pauses]. But I truly believe that when

over and they this is all
get rid of this [the cancer], I don't think it will ever come
back. ... I think most of my friends and the people around me
11
12 — EXPERIENCING CHRONIC ILLNESS
don't look upon me as a sick person, because they know the
situation is only temporary. And I think he [Greg, her on-again,
off-again lover] knows that and that's what I told him; I said,
"It's not going to be like this all the time, you know I am going to
get well, and that's very important."
Disruption. Disbelief, then doubt. After Gloria's second sur-

gery for Hodgkin's lymphoma, she faced radiation again this —
time with massive amounts of chemotherapy. Nonetheless, she
remained steadfast in her view that she had an acute illness to
be battled and won. Then Greg confessed that he did not know
if he could handle the possibility of cycles of illness and treat-
ment culminating in death. Greg's fears undermined Gloria's

views and dampened her hopes. When I asked her, "What did
he say?" she said, "Well nothing really, he agreed and said,
'Yeah, that's true' [that the illness was temporary]. I just gotta
go through the treatments, get it done and over with. I've got to
get it behind me and past and go on and do what I want at that
point. I want it to be over. I want to be able to look back and say,
"
'The treatments are finished.'
Temporary crisis. Life-saving treatments. Full recovery. These
words reflect how Gloria Krause defined her illness. Somehow
she could not die, for, at thirty-four, her life had hardly begun.
Chronic or terminal illness seemed too improbable impossible. —
Gloria took refuge in defining her illness as an interruption. By
putting brackets around it, she felt that she had more control and
could combat it. For a number of years, Gloria's experience repli-
cated her definition of illness. Each time, crises, treatments, and
complications temporarily engulfed her in illness. Then relative
quiescence. Yet Gloria never fully regained her strength and
vigor after her first ordeal.
Like Gloria Krause, many people start their journey through
chronic illness with a crisis. Improvement and felt recovery
may follow. Even if people with serious chronic illnesses do not
begin with crises, they have crises later, perhaps much later.
Undoubtedly, having certain types of cancer such as Hodg-
kin's lymphoma can promote defining illness as an interrup-
tion of life. Having a condition such as congestive heart failure
may not. Nonetheless, someone who has congestive heart fail-
Chronic Illness as Interruption h 13
ure might have similarly defined his or her heart disease for
years.
What does defining illness as an interruption assume? In its
clearest form, illness is temporary, of short duration, and with a

predictable outcome: recovery. Hence, people expect to get
ill
better — soon. They have little or no concept of chronic illness

and disability.
These beliefs assume and an unaltered
a temporary present
future. Complications? Unrelenting illness? Permanent disabil-
ity? These outcomes seem unreal, or at least unlikely (Charmaz
1985a; McGrail 1978; Pill and Stott 1982). Should these nagging
—
questions arise, ill people hope and sometimes avow that —
they will be spared such troubles. A firm vision of a positive
outcome also results when ill people have won past "victories"
over illness. They believe that they will recover again despite
physicians' dire warnings. Hence, they view illness as some-
thing to struggle against and to defeat (Charmaz 1987).
How do definitions of illness as an interruption shape
thoughts and actions? How do interruptions occur? What is
time like? How does time during a crisis contrast with other
experiences of time? Who witnesses the illness?
Looking for Recovery
Defining illness as an interruption means looking for recovery.

Initially, it means looking for complete or nearly complete recov-
ery; later on, it means looking to regain the last plateau. This
definition is consistent with conceptions of acute illness and
care, which commonly frame assumptions about illness, includ-
ing those of many practitioners. Here, ill people adopt the sta-
tus, expectations, and time perspectives of those who have
acute, rather than chronic, illnesses. They may become living
exemplars of Parson's (1953) "sick role," which is predicated
upon assumptions of acute illness. That is, they willingly relin-
1
quish ordinary adult responsibilities, become cooperative pa-

tients, and expect their physicians to cure them. For them,
being ill equals being in the sick role.
Being hospitalized for a period buttresses this definition of
illness. In fact, however, the hospitalization may signal a series
of changes that identify people as chronically ill and propel
them into the role of a chronic care patient. When seventy-nine-
year-old Effie Kolb had fell and soon
a mild heart attack, she
found herself with a broken knee. Her fall
in the hospital
started a chain of events that led to her placement in a board
and care facility. As she looked back, she said, "I never ex-
pected what [actually] happened; I never expected to lose my
home. No, I just thought I was going to get well. I hated to
break up my home, you know. I didn't think too much about
that I wasn't going to get to live a regular life."
People like Effie Kolb do believe that recovery requires time.
Taking a "timeout" to work on getting well or to wait for recov-
ers grants illness a special kind of time, meriting a temporary
halt of usual pursuits. Certainly devastating symptoms allow
no other choice. In addition, physicians provide legitimate rea-
sons or requirements for taking time out for illness. Patients
make comments like the following:
I have to take time to get back on my feet.

I'll be good as new after I finish the treatments.
My doctor says I have to take a leave so that I can concentrate
on getting well.
With the timeout, priorities and pursuits shift radically. If

everyone involved agrees that the illness is serious, the shift is
complete. Consensus obligates ill people to take time out and to
wait for recovery (Parsons 1953). Hence, they not only put their
lives on hold, but also their identities.
A valid crisis may seem unrelated to chronirity. Typically,
people define their severe onset as bona fide illness. But they
may stop there. Real interruptions by illness include "when I
passed out," "when I was rushed to the emergency room," or
"when I had the heart attack." To them, being sick means being
in crisis.
Assumptions about recovery and recovering self, i.e., retriev-
ing a past self, presuppose imposing order on potential chaos
—
and shutting out dark shadows decline and death. More con-
cretely, these assumptions also presuppose an active physician
Chronic Illness as Interruption an 15
and a relatively passive patient. Further, these assumptions

foster medical compliance. Thus, the patient may later feel be-
trayed when compliance does not pay off in recovery.
Beliefs in recovery as the sequel to illness take on moral impera-
tives. Ill people's "should" recover often shades into "merits" or
"deserves" recovery. A number of people, including Gloria
Krause, echoed this woman's comment: "I really feel strongly
that once this [illness and treatment for it] is over, that's it, that
I've paid my dues with my health."
Beliefs in meriting recovery follow earlier diagnostic shock
(Clarke 1982) about having the illness at all. As a result, these ill
people bargain with themselves and their practitioners (Char-
maz 1980b; Kiibler^Ross 1969). As Lorber (1975) says, they try to
be "good" patients. They want to do the "right things" for
themselves and by extension, their families; they do not wish to
bear the stigma of illness or to burden their families (cf.
Schneider and Conrad 1983). Being good patients buttresses ill
people's beliefs that they have honored their part of the con-
tract, however tacitly they bargained its terms. In their view,
they have atoned for whatever prior failings or omissions for
which they might have felt responsible. For them, being good
patients means taking time out for illness. Having done so,
they feel that they deserve to return to the activities on which
their preferred identities and their "real" selves (Turner 1976)
rest. 2 Hence, in their view, being ill means temporarily putting
aside their identities and selves while they recoup and wait for
recovery. Since they expect to recover, they feel no need to alter
their conceptions of self for any length of time. In such cases,
illness remains external to the self (Kidel 1988). Hence, these
people view themselves as currently identified by temporary
illness, but with their social identities awaiting them.
Certainly, having virtually no conception of chronicity can
prompt people to look for recovery. A middle-aged woman had a
diagnosis of multiple sclerosis for seven years and could trace
episodes for eighteen years. She saw her illness as a series of
acute episodes. She said, "It's like having a bad flu. Everyone
gets the flu sometimes." This woman did have some continuous
symptoms such as sporadic confusion, slight memory loss, loss
of strength, and high fatigue. However, because she had no
need and had always avoided intellectual
for a rigid schedule
tasks, her symptoms remained unobtrusive. Her definition of
illness affected how she handled her condition. She said, "I
should make a pattern of my vitamins and I should make a
pattern of my exercise, and of my rest. But I guess I just don't
think of myself as being sick."
Subsequently, this position can lead to acknowledging the
presence of illness during an episode but to disassociating self-
concept from it. Under these conditions, people feel as though
they have been hurled into an unreal world. While there, they
witness their bizarre symptoms and failing health. But they ex-
pect to return to their real world and real self. As one woman
said, "It was almost like being in a dream world. You never really
believe that you have something that's going to degenerate to
where you couldn't walk. It was outside of me. I couldn't relate
to it. I believed it —
but didn't believe it [that it would last]."
The assumptions of acute care seem to work when ill people
define only the worst episodes of illness as interruptions that
merit professional attention. By adopting the model of acute
care in this way, they resist having illness inundate their lives
and their self-concepts.
All the foregoing views make sense, given the experiences of
illpeople. But often, practitioners believe that these views re-
flect their patients' denial of illness.
Constructing "Denial"
Why do some people act as if their illnesses are acute, when

practitioners and the public see them as chronic? Why do other
illpeople discount medical information about their illnesses?
Why do still others insist that their lives will go on exactly as
before, even though they now have an impairment?
Denial of illness is the standard answer to these questions.
However, an understanding of ill people's meanings of their
illnesses and their actions leads to a range of interpretations of
which denial is merely one possibility. Further, the concept of
denial cuts off the very interactive and interpretative processes
that lead to evaluations and judgments of it. Denial becomes
Chronic Illness as Interruption mm 17
something seen as inhering within the person rather than as a

judgment pronounced about that individual or as a product of
the interaction with him or her.
Denial is a label. Definitions of denial rest as much on judg-
ments as on an ill person's behavior. Therefore, denial is an
elastic category. It stretches (Charmaz 1980b). Judgments of de-

nial decreed by powerful professionals stretch to fit their
agenda, usually patient management and compliance. Profes-
sionals sometimes make hasty judgments of denial during fleet-
ing encounters with bewildered, shocked, or fearful patients,
who cannot communicate, or perhaps even articulate, their con-
cerns at the time.
Responses indicating "denial" actually may reflect natural
outcomes both of the structure of patient-practitioner relation-
ships and of patients learning how illness affects their lives.
When professionals believe certain patients deny their ill-
nesses, they deny them partnership in treatment planning.

And occasionally, they write these patients off early in the
course of their illnesses (Charmaz 1987). By doing so, profes-
sionals may preclude these patients from receiving services or
assistance later when they have learned what their illnesses
mean.
Judgments of denial also pervade ordinary discourse about
illness. Ill people, and their families and friends, increasingly
adopt the language of denial. Hence, the attendant judgments
of denial reach into intimate relationships and into self.
How do judgments of denial arise in illness? What it means to
have a chronic illness is ambiguous in several ways. First, as
implied above, many people hold sketchy and simplistic concep-
tions of their illness. Physicians themselves may feed their pa-
uninformed views and sketchy conceptions. For example,
tients'
Christine Danforth had seen a dermatologist for almost a year.
She recalled:
,
Well, first he was] photodermatitis/ and he said that
said, "[It
for a long time and then, he said, "No, discoid lupus." And I
said, "What is it?" And he said, "Oh, it's just a rash." And he
never really explained what it was. And a friend of mine told me
a little bit because she had a medical background. ... I said [to
her doctor], "Somebody told me you couldn't sit out in the sun."
He said, "Well, it's not a good idea." But he was real ... it was
like, "Don't question me."
Physicians may be forthright about the diagnosis but let their

patients discover what the diagnosis might mean. Ron Rosa to
recounted, "I said, 'Well, what is this problem?' And they put
me in a hospital and took a lot of tests, and they said, 'Every-
—
thing is fine, Ron, but so we've come up with multiple sclero-
sis, a possible multiple sclerosis.' I said, 'What is that?' And
they said, 'You'll learn about it.' And I did."

If an initial crisis is all-consuming, it mitigates against think-
ing about progressive impairment or episodic cycles. During

her first episode of multiple sclerosis, Heather Robbins had but
one pressing question: "Am I going to die?"
The more esoteric the illness, the more likely the person ini-
tially lacks information and understanding about it. Like Ron
Rosato, many of my respondents did not know what their diag-
noses meant at first. A woman with multiple sclerosis sus-
pected that she was having a mental breakdown because she
did not know that double vision and forgetfulness were sympto-
matic of it. Another woman with lupus erythematosus ex-
pected to recover fully from her condition, if she followed her
physician's orders.
It is hard to deny the "facts" of one's existence if one has
neither the facts nor access to them. It is also hard to deny

"facts" physicians give patients contradictory information or
if
if different physicians' recommendations cancel each other out.
Sara Shaw abandoned medical supervision entirely for five

years. She said, "After I realized the doctors didn't know what
they were doing, I did much better [on her own regimen]. The
doctors don't know."
Furthermore, people who had esoteric illnesses seldom could
get facts from fellow patients, mainly because they did not know
anyone else with the same condition. Nancy Swenson said,
"Only one in 2,000,000 get this disease, so I've never had the
opportunity to meet anyone else who has it." Family or physi-
cians sometimes prohibit independent information-seeking,
particularly at the onset. Several people with neurological
conditions reported that their physicians expressly told them not

to read anything about their conditions because of inaccuracies.
When a middle-aged woman received a diagnosis of multiple
sclerosis, she asked her physician about joining a self-help
group. She said, "He told me, 'I don't want you to meet anyone.
Only the worst cases go to those meetings/ "
New treatments and surgical procedures sometimes reverse
or extend the course of previously "hopeless" conditions.
Some patients then say, "I'm cured," but do not realize that
from a medical perspective they still need to follow a medical
regimen. Like others, a middle-aged man said, "My heart
—
condition I don't have a heart condition any longer the sur- —
gery cured that." Certainly physicians' enthusiasm for particu-
lar procedures or treatments occasionally convinces patients
that their distress is temporary (Petch 1983; Radley and Green
1987).
Medical breakthroughs raise hopes that a miraculous inter-
vention might emerge if one can hold on long enough. Several
people said, "There's always hope of a cure." Such hopes
stress dramatic improvement or recovery derived from equally
dramatic means. Further, hopes for the future undermine moti-
vation for taking present action, which is predicated on a con-
tinuing illness.
Definitions of illness may foster responses that look like de-
nial. What stands as a bona fide "chronic" illness? Criteria for
chronicity sometimes become murky in specific instances. For
example, the course of cancer can vary from an acute or chronic
to a terminal illness. And five-year "survival" rates become
reinterpreted as "cure" rates, which, in turn, promote defini-
tions of episodes as acute. With such ambiguity, no wonder
that ill people choose the most optimistic definition.
Further, the course of a chronic illness may be atypical. Stories
abound of patients whose "miraculous" improvement defied all
their practitioners' predictions. Such stories feed hopes and —
hopes spawn judgments of denial. Yet I found several people
whose personal dramas matched myths of miracles.
In addition, long periods may elapse during which an illness
progresses slowly. For example, a woman of fifty-seven had
been diagnosed with multiple sclerosis thirty-five years earlier.
"

Prior to experiencing a major exacerbation, she had treated
episodes of her illness as interruptions without much serious or
lasting consequence. Hence, for most of her adult life, she de-
fined her illness according to her experience of it.
Definition and experience of chronic illness dialectically affect
each other. A view of oneself as only having a minor ailment or
occasional bouts of serious illness can last if the illness is epi-
sodic. At those points, illness comes to the foreground, but
otherwise it remains in the background. Four years after going
on heart medications for frightening symptoms, Vera Mueller
said, "I don't think about it at all; it is very much in the back-
ground now.
Definitions of illness may merge with beliefs about the power
of personal motivation. In turn, these beliefs may be judged as
evidence of denial. A number of people believed that thinking
positive thoughts about recovery, keeping a positive attitude
toward self, not giving in to being sick, and the like would
shape the outcome of their illness. Lara Cobert's progressive
symptoms resulted in a diagnosis of myasthenia gravis. She
said, "I kind of believe that as soon as you accept something,
that helps make it so. So I was not about to do that. I didn't
—
want to close any doors. I never George [her boyfriend] used
to point out [that] I'd say, The doctors said I have myasthenia
"
gravis/ I have myasthenia gravis.'
didn't say, 'I
To the extent that people do not experience their altered bod-

ies in their own worlds or to the extent that they can define
impairment as temporary, they will not view their conditions as
chronic. Their stance looks like denial, but it derives from the
reality of their experience. Because part of the issue of denial
derives from how and when others make such judgments, pro-
fessionals should broach legitimate questions of denial only
after an ill person has had time to experience his or her body in
its altered form.
Certainly, the possibility of denying illness still exists. If ill
people persist in defining their illness as acute, but it long con-

tinues, they plant the seeds for denying illness. Likely, these
people stretch their "allowable" duration of an acute illness,
because they do not wish to acknowledge that illness has be-
come something more than an interruption.
Learning about Chronicity
Weeks and months of unrelenting symptoms teach ill people

about chronicity. Further, learning about chronicity means dis-
covering its effects upon daily life. By attempting to manage
their usual activities, ill people discovered the meaning of their
altered bodies. After his first heart attack, Harry Bauer recalled
that"when I was laying on the bed there [at the hospital], I told
the doctorI was going to go back to work. He said, 'No way/
He said, 'When you get up from there, you'll find out how
weak you are/ I used to be able to pick up 100 pounds in each
hand. When I got up from there, I found what he meant, I
couldn't hardly hold myself up."
The meaning of disability, dysfunction, or impairment be-
comes real in daily life. Until put to test in daily routines, some-
one cannot know what having an altered body is like. Heather
Robbins did not have her first serious episode until ten months
after her diagnosis. But others mistook having a diagnosis with
dealing with the disease. She recounted:
People said, "You deal with this so well [immediately after diag-
nosis] ."I just said, "I haven't really dealt with this because I
haven't been ill." I mean you can't deal with something until
you've experienced something, uh, you don't have to. So as
soon as I got sick with it and had to deal with it then, that I think
is when I realized I had MS [multiple sclerosis]. . . . Now am
I
learning where I can go and how much I can do without knock-

ing myself out.
The yardsticks of the past, not of an altered present and

future, measure distances to walk, tasks to complete, and plans
to make. Lessons about chronicity come with discoveries that
those yardsticks pose arduous or impossible standards.
Frequently, ill people must abandon their hopes and plans,
and relinquishtheir former activities. Illness and disability force
—
lowering expectations of self at least for awhile. Yet doing so
shocks and unsettles people. In his book, psychiatrist Clay
Dahlberg recounts his feelings when he learns that he can go
—

home after having a CVA [cerebral-vascular accident]: "That
was a glorious day. I started planning
all the things I could do
with the incredible amount of free time I was going to have.

Chores I had put off, museums and galleries to visit, friends I
—
had wanted to meet for lunch so many joyful things. It was
not until several days later that I realized I simply couldn't do
them. I didn't have the mental or physical strength and I sank
into a depression" (1977:30).
The difference between past and present functioning con-
trasts sharply, for the past remains so close. After a few days of
convalescing at home, Dahlberg tried to work on several of his
usual projects. He states, "I wanted to do some necessary
house repairs and work on my amateur sculpture, but shortly
discovered that I had neither the physical nor mental ability to
do much. Sculpture requires concentration over a period of
several hours and I was just not up to it. A repair also, even a
small one, demands a steadv hand and I didn't have it"
(1977:41).
When ill people return to work, the "before and after" con-
trasts become striking. These contrasts call into question their
sense of self and undermine their taken-for-granted notions
about their capabilities. For example, a middle-aged woman
with heart disease had been known as a fast worker in her unit.
When she returned to work, after having had a serious heart
attack, she discovered that she could not complete her work on
time, let alone early.
Even if ill people's work has been modified, they may learn
that they need more help. However, the social repercussions of
requesting help may prove too costly. Here, learning about
chronicity includes learning about stigma. Lin Bell, a middle-
aged woman with heart disease, worked as a janitor with a
team of men. After her first bypass surgery she said:
I have on me at work and if the guys see

a lifting restriction
they're always coming by and saying, "Now you take it easy"
and we have these great big barrels that we roll around and fill
with trash and stuff and if they see me going, heading out ... to
the dumpster to dump that, they're right there, real protective.
But I won't ask. I don't want any special treatment. I don't like to
be treated as less than I feel that I am.
Chronic Illness as Interruption m 23
Rather than face chronicity, some people will go home or
even retreat to bed and wait until they recover. They expect to
awake one day and once more reclaim their past selves. Here
again, assumptions of recovery make illness simply a way sta-
tion between prior and future states of health.
Yet for others, the meaning of illness as interruption is less
stable. As they experience their bodies in time and space, they
learn that this episode means more than a brief interruption of
their lives. With this realization, they redefine their illnesses
and what they need to do about them.
Defining Interruptions
Defining any interruption means that ill people, or their fami-

lies,think about the illness. They treat it as a separate event,
distinct from other events. Usually, they seek help. People
come to define illness as interruptions in four ways: 1) experi-
encing disruption without diagnosis (multiple sclerosis, lupus
erythematosus, 2) suffering a rapid escalation after vague symp-
toms followed by crisis (heart disease, epilepsy), 3) being
stricken with a sudden severe onset (myocardial infarction,
CVA), and 4) getting bad news from unexpected test results
(cancer).
Disruption without a diagnosis is jarring. For a time, ill
people may account for a disquieting incident or strange sen-
sation by viewing themselves as under "stress" or as suffering
psychological duress. To the extent that physicians spark or
concur with their reasoning, they seldom seek further explana-
tion until their conditions worsen.
Because she accepted her doctor's view that she nearly had a
"nervous breakdown," Cynthia Birrer only remembered the fol-
lowing episode long after she received a diagnosis of multiple
sclerosis. In addition to the vision loss she describes below, her
symptoms included a staggering gait, quivering hand, numb
foot, and complete exhaustion. She writes:
It all began, I think in 1967. That was when I first became multiple
sclerotic. Now I well remember that day in late October. . . .
Feeling quite sick,I walked listlessly into the gray shed that
housed the overnight book loans. Whatever it was did not pass.
Reluctantly I took my place in the scheduled room. Picking up
the question paper, Igave a moment's thought to the time-
honored injunction to read it carefully. Dismayed, I found that I
could not read it at all. I held a single sheet of paper whereon two
blurred, indistinctly typed images overlapped . separated. I
. .
cursed. How could I allow an exam to upset me like this? I

covered my left eye but that was no good; the faint letters slith-
ered hither and thither. (1979:60)
Accepting a doctor's diagnosis ends the search for explana-

tion. Recurrent symptoms, however, can result in people be-
lieving themselves to be ill though their doctors can find no
physical cause. Several people even had physicians who
agreed that they were too ill to work. Yet these ill individuals
could not apply for disability assistance because they did not fit
the accepted categories.
Lacking the physician's validation of illness is even more trou-
bling. People with esoteric illnesses often felt that their physi-
cians portrayed them as feigning illness, either by magnifying
insignificant symptoms or by psychologically inducing physical
distress. The feeling of being discounted and distrusted intensi-
fies when family and friends share the physician's view. Doubt
multiplies. When everyone else doubts that ill people are sick,
they even begin to distrust their own bodily sensations.
Diagnostic relief follows a late diagnosis. When a physician
finally identifies the problem, these ill people often first re-
spond with relief and gratitude for receiving a seemingly dread-
ful diagnosis. A middle-aged woman with a metabolic disease
said, "Thank God. At last I know it is something real."
The diagnosis gives these people legitimacy, restores others'
faith in them, and, moreover, renews their belief in themselves
as having genuine feelings and valid complaints. At last, their
conditions can consume the attention that others had riveted
on their fragile selves. At last, they might receive the help they
seek. They prefer facing a devastating diagnosis to defining
themselves as neurotics, malingerers, or shirkers.
Whether these people previously blamed their psyches, phy-
sical beings, or physicians for their distress, they had suffered

from profound discord within themselves and within their
worlds. When that discord lasts for months or years, the lack of
validation shatters their trust in themselvesand their percep-
tions. Not only may these men and women accept their diagno-
ses, they may embrace them. Having a diagnosis gives respite
to a shaken self.
Commonly, amorphous symptoms eventually worsen or

another more alarming symptom develops; illness rapidly esca-
lates (Locker 1983). An older woman had had Reynaud's phe-
nomena for years, but only after she developed a severe rash did
she begin to suspect that she had lupus erythematosus. A young
woman had had spells of extreme dizziness. She discovered that
her balance and coordination were so poor that she could not ski.
Then she became frightened and sought help. After her physi-
cian diagnosed her as having multiple sclerosis, she looked back
through the past and found several other episodes that could
have been multiple sclerosis. Like Cynthia Birrer's (1979) experi-
ence with it, she could now reinterpret the past in light of the
present diagnosis.
If troublesome symptoms, even pronounced ones, do not last,
people often do not seek help. Lin Bell first had frightening
symptoms five years before her heart attack. But they soon sub-
sided and her other symptoms remained vague. She recalled:
We went up to Tahoe on vacation and all of a sudden I felt like a

cement truck was falling over me. .And then I got real scared
. .
and so we got in the car to come back home, because I didn't

want to go to the hospital up there, I wanted to die in Santa
Maria. Half way down the mountain, I felt terrific, so I lit up a
cigarette, you know, and then we had a fight because — so I
wasn't going to go to the doctor 'cause I felt fine once I got off
that mountain. And finally I went to the doctor, oh, about four
days later. And that's when he started me on Inderal and all that
blood pressure [medication].
A rapid escalation reduces self-blame, if professionals had dis-

counted vague symptoms. Lin Bell's physician had diagnosed a
mild angina. But her symptoms mysteriously worsened:
—

I passed every treadmill test I ever took. You know, I last I do —
great on them. But then ... I just got terrible angina pains one
night. ... So I went in the following Friday. ... He [her cardi-
ologist] had asked me if I could be bringing this on myself and I
said [that] I didn't think so. Because it happened, you know,
when I went to —
bed I mean why would you want to bring
something like that on you when you're going to bed for a good
night's sleep? I said, "I don't — I don't think so, Dr. Martin." And
it made me he thought I might be a hypochondriac.
feel like . . .
My mother enjoys poor health, so I was just crushed think-

. . .
ing that I was becoming more and more like Mother. ... So
when he took me in for the angiogram and they were looking,
you know, up at the screen and stuff, he says, "Oh Lin, you're
you're not imagining anything. One of your arteries is almost 90
percent closed." And I said, "Oh, thank God!" I was so happy
because I knew I wasn't like Mother.
Lin Bell had had disturbing symptoms long before her doc-
tors discovered anything definitive. An older man with heart
disease only had a "funny feeling on my face, which didn't
happen again" before his heart attack. His doctor tested him for
a blockage and found nothing, but told him he had had a mini-
stroke. Ten days later he had severe chest pains. He said:
Ihadn't exercised for about four months so I went to the gym and I
did aerobics, real hard came home and an hour later I was in
. . .
the hospital. So that brought it on. ... It was a tightness and, I

couldn't breathe and on the way down there, I started perspir-
ing. ... I said, "Dave [his son], take me to the hospital," and he
says, "Do I have time to take a shower?" And I said, "No." Any-
way, it was very funny. And then on the way down there, I
7
. . .
thought he was going to crash into somebody and I said "We . . .
want to get there," you know. So he races the car up to the door,
and they open the door and bring a guerney out and David's still
behind the wheel and the nurse says, "Don't let him drive into the
lobby. " They thought he was going to drive right in in his little car!
—
Anyway, it was, ah I almost died laughing.
Despite preceding symptoms, someone may not view his or

her rapid escalation or crisis as marking a chronic illness. Even
sophisticated patients sometimes permit medical terms to ob-
"
Chronic Illness as Interruption mam 27
scure the meaning

of their conditions. Medical historian Ilza
Veith made
sense of earlier mysterious bodily sensations when
she diagnosed herself as having had a cerebral-vascular acci-
dent. Her physician confirmed her self-diagnosis. She writes:
No one in the world can imagine how grateful I was to hear the
expression " cerebral vascular accident/' It seemed such an ele-
gantly youthful affliction as compared to "stroke," which I had
used all along in my private conversation with myself. A stroke
denoted a drab condition of elderly, if not to say, old, patients, and
there wasn't anything scientific about it. But CVA had that learned
— —
elegance and innocent as I was at that time suggested a matter
of impermanence. (1988:18)
Rapid escalation. Quiescence. Improvement. Cycles that in-

cludesome improvement foster optimism despite more severe
episodes. Further, someone may not believe that a present set-
back points to permanent disability and thus resists adopting
any symbols of it (cf. Duval 1984). An elderly woman's un-
steady gait resulted in a prescription for a cane. Rather than
buy one, she decided to rent a cane. "That way I'll work to keep
it [her illness] temporary; I'll have to give the cane back.
Frequently, ill people limit their activity and autonomy rather

than tacitly affirm that they have suffered further physical
losses. To them, acknowledging decline symbolizes an intol-
erable assault on their self-concepts. Illness threatens to leave a
permanent stigma.
A sudden onset of illness can cast people in the patient role
immediately. They lose consciousness, have seizures, or lose
control of functions. However, even a sudden onset is a process
rather than an event If people can view their symptoms as trivial,
.
albeit unpleasant or painful, they usually do so. Consistent with

Cowie (1976), men with initial heart attacks sometimes normal-
ized them for several hours or more before seeking care. For
example, a dentist recounted:
We had two my grandchildren and my son and his wife for

of
dinner and it was a very stressful day. ... So, when they left, I
had a little bit of what I thought was indigestion. And ah, I went
28 « EXPERIENCING CHRONIC ILLNESS
to bed and I couldn't sleep and I had this pain and I took some
antacids and got up and sat up and listened to the television . . .
and finally, the pain got more severe in my stomach. . . And

.
I —
I suddenly found that I couldn't close my teeth together. Be-
ing a dentist, I know that one of the signs of coronary attack is

disarrangement, apparently, in the jaw so you can't put your
teeth together. So I thought, "Well, it's happened."
Getting bad news, such as an unexpected serious diagnosis,

can catapult anyone into crisis. An ordinary adult becomes
transformed into an ill patient. Frequently, these crises come
without warning through test results. A medically constructed
interruption develops in three ways: 1) previous normalization
of symptoms (Davis 1963; Wiener 1975), 2) gradual discovery
through testing, and 3) unsuspected validation of illness or
crisis.
Niel Fiore describes getting bad news: "It became apparent

that the lump was not going away by itself and should be
examined by a doctor. ... I had come in for antibiotics for what
I had hoped was simply an infection but, without ever checking
with me, he was talking about removing my testicle for precau-

tionary reasons" (1984:2-4).
A few people I interviewed had had vague symptoms but
normalized them. They did not seek medical advice for them,
per se. Rather, their physician found evidence of illness dur-
ing a routine physical. For example, a young woman had a
physical before entering nursing school. Afterwards, her physi-
cian told her that she had severe diabetes, which necessitated
a complete medical workup in the hospital. Previously, she
had blamed her anxiety, fatigue, and weight loss on working
too long, studying too hard, and dating too often. This
woman felt surprised and embarrassed that she had not cor-
rectly recognized her symptoms.
Shock diminishes with multiple tests despite lack of physical
distress. But physicians may offer reassurance that further test-
ing means nothing. One woman's doctor requested that she
have another X-ray in a month, just to check the first X-ray. She
did not suspect anything, although as a former medical techni-
cian, she knew more than most patients. Sequential tests, signs
Chronic Illness as Interruption amm 29
of illness, and interactional cues raise suspicions. This woman

began to suspect cancer when her husband told her to call her
doctor after having the second X-ray. She felt rising panic, "I
just had that sense of being in two places; I mean it was like a
high tight place I was in."
Further positive test results increase the person's suspicions.
This woman recalled having the X-ray: "Because I came in from
out of town, the doctor processed it right away and they
. . .
told me
something was there. I cried; there was all sorts of
things that it might be; it might not be cancer. So I had to go in
and have a [test] that same day. There is something called calcifi-
cation which it might have been. But it wasn't."
. . .
Such episodes may seem entirely removed from ill people's

selves and their bodies. They feel shock and disbelief one mo-
ment and loss and grief the next. Their anxiety mounts as each
testconfirms their worst suspicions. As one woman remarked,
"as far as time seemed concerned, everything seemed intermi-
nable. Every wait, every wait for every report from every test
was intolerable."
The Experience of Time
What contributes to different experiences and perceptions of

time during initial and continued disruptions of illness? When
do people attend to time? Clearly, the type of onset, ill
ill
people's preconceptions about illness, their lives, and their

actual illnesses all affect how they experience time.
Elusive Time
How people experience time depends, in part, in how they

ill
experience their symptoms. When ill people gradually accom-

modate to vague symptoms, the present seems almost the same
as the past. Moreover, if others' help automatically increases,
then both illness and a changing experience of time remain
muted.
A recently retired husband, for example, gradually relieved
housework. Although her illness had
his arthritic wife of tiring
progressed, she still experienced it as sometimes interrupting
her life, but not as intruding upon it. Because of his help, she
marked time in large chunks and did not need to gauge her
activities against clock- time.Here, experiencing occasional in-
terruptions, having her husband's help, and having a slow
progression of illness coincided to forestall changes in her ex-
perience of time. In contrast, such changes occur rapidly when
symptoms disrupt life and no one offers to help.
When a crisis follows slow progression, ill people may ex-
plain a formerly elusive relationship to time. "No wonder doing
everything took so long. " "Now that I look back, I realize that I
was cutting back on my usual activities. ,, "I had slowed down."
Waiting Time
Defining chronic illness as temporary fosters experiencing

time as waiting time. Yet ill people's situations shape their expe-
rience of waiting and their emotions shade it. Thus, different
types of waiting emerge. Sometimes people experience each
type of waiting sequentially, perhaps in rapid succession.
To begin, an assured outcome means waiting for an affadavit
certifying health or promising recovery. If people do not define
themselves as presently or potentially ill, they simply carry on
as usual while waiting. They preserve an earlier tempo and
time perspective with little sense of emotional disruption.
When they first receive medical attention, these people wait for
concurrence of expected good news. For example, a woman's
physician ordered a biopsy for a lump in her breast. Because
she had none of the predisposing factors, she assumed that the
lump was benign. For her, the waiting meant validating her
assured outcome.
Here, waiting derives from bureaucratic rituals removed
from ordinary life. Waiting becomes annoying dead time.
Thumbing through boring magazines in the doctor's office fills
empty time. Lying under a paper cover alone in a chilly examin-
—
Chronic Illness as Interruption — 31
ing room for half an hour wastes time. Standing in long lines at
a clinic is frustrating and grating. The meaning of waiting lies in
the irritating concrete experience of it. Waiting time means lost
time and a loss of control over time (cf. Schwartz 1975).
Although these people believe that they will have an assured
outcome, they do wait. To them, seeking medical care and follow-
ing medical advice attest to taking responsibility for their health.
Only in this limited way does waiting touch their self-concepts.
They place their real selves in the immediate past. For them,
waiting is only incidental, soon to be dismissed and forgotten.
In contrast, acknowledgment of possible or present illness
causes perspectives and experiences of time to change. The
period of waiting means the time necessary to pinpoint prob-
lems or to create recovery, whether by "fighting" illness and
"taking" responsibility, or by becoming a patient. As people
increase their fight against illness, time quickens. As passive
patients slow down to the sick role, time also slows down.
Like an assured outcome, an improbable present distances
self and feeling from unfolding events. Yet events do unfold
and from "objective" views portend of bad news. "What? Can
this be happening to me?" The events ill people experience
—
seem surreal unreal. Recent events have thrown them into
another reality without warning. Like Dorothy in The Wizard of
Oz, they feel catapulted into an alien world in which events
remain dissociated from them. They wait to get through the
present so that "real life" can go on in the future just around
the corner. Since the present seems so improbable, they wait
for it to end and with it, the shadows of illness. Until then, they
wait.
An improbable present occurs when a person waits for reassur-
ance that symptoms or earlier tests mean nothing. Joanne Dhak-
zak recalled being diagnosed with Hodgkin's disease: "I was in
such a daze. I didn't believe that it was happening to me
because when I went to the doctor, I said, T don't know why I'm
here. There's nothing wrong with me.' Maybe that's why it came
as such a shock when the doctor said I had Hodgkin's."
Is itcancer? Could it be angina? Pangs of uncertainty spring
up when current, frequently undiagnosed, symptoms could
32 — i EXPERIENCING CHRONIC ILLNESS
mean a serious chronic illness. Avowals

that current symptoms
are temporary and mean nothing are pierced by nagging
doubts, silent questions, and fleeting moments of dread and
fear. Much fear and anxiety may hide beneath a social face.
Long moments of doubt and fear lead to focusing on self. When
people disallow their fear, they may dive into their usual rou-
tines. Waiting ranges from disquieting moments to a distress-
ing ordeal.
Pangs of uncertainty develop as one discovers bodily changes,
cues from other people, and facts about the disease. As clues
accrue, what may have began as passive, rather complacent,
waiting ends in uncertainty and dread. As uncertainty grows,
fears sometimes become worse than later realities. Someone
may fear a brain tumor but the condition turns out to be multiple
sclerosis (Robinson 1988b). Someone else may fear heart disease
but it proves to be ulcers.
When pangs of uncertainty lead to fear and dread, people
wait to know, to be sure. They wait for information. They wait
for change. They wait for telling symptoms to develop. And
they wait for them to subside. Between signs and clues, time
stretches into a long, empty duration. Time stops. These people
become locked into a protracted limbo. The self swings be-
tween an anchored past and an uncertain future. A woman
said, "I felt that
. . . —
T don't have anything; it's silly. It's noth-
ing. What am I getting all upset for? Why be a hypochondriac
and what if I do and I probably do [have cancer] and then what
will I do?' And my life is just falling apart. These two fears go
on simultaneously or alternately back and forth a great deal." A
recurrence of past diagnosed symptoms fuels suspicion quickly.
Inch by inch, pangs of uncertainty grow into dread and fear.
In contrast, an agonized waiting means excruciating psycho-
logical and/or physical suffering now. Waiting means getting
that time over and regaining control of self and life. Illness and
treatment overtake these people. Time slows. Waiting seems
endless. Another woman faced the uncertainty of a recurrence
of cancer. She said, "It was dreadful; those were the longest
days. I couldn't concentrate on anything else."
Unlike most people, Gloria Krause made no distinctions be-
tween an agonized waiting and conventional clock- time. For
her, rather than time stopping, her world stopped. When de-
scribing her round of chemotherapy, she remarked:
It [time] was like anytime — it was the same. It's just like right
now. It's like everyday life. It's — time
didn't seem
is just time. It
long; it didn't seem short. Of

wanted to get it over
course, I just
with. And I'd call my doctors and I'd say, you know, "When?,
what's going on?, what's happening?, when's this going to
stop?" And they'd say, "You've just got to ride it out." So it was
just a matter of waiting. When I was sick, I you know the
. . .
— —
world stopped. It was a real helpless feeling, though, a real help-
less feeling.
Whatever their views of time, people ache to end this waiting

and long to put it into the past, or to forget it.
A dreaded future may coincide with agonized waiting. The
future, as well as the present, remain unsettled and undeter-
mined. The dreaded future engulfs the present self. Likely,
someone puts his or her self on hold. The self experienced
—
now be it a grumpy, fearful, martyred, apathetic, or with-
—
drawn self becomes a temporary self. The past self remains
insulated and protected. By being held in abeyance, the past
self remains less contaminated and muddied by illness. Then,
should the news be good, the person can resume being his or
her past self. Thinking about resuming the past self gives solace
in the ambiguous present and reduces the sting of the dreaded
future. Doing so may also provide a time buffer during which a
person can begin to adapt to change.
Crisis Time
Crises are founded on disruption, immediacy, and immer-

changed present separates from the
sion. In crisis, a radically
past. Like a guillotine, the crisis severs the present from the
past and shatters the future. Hence, ill people feel severed and
swept away from their pasts into an uncontrollable present and
future.
The actual interval of time between the immediate past and
—

the present crisis is brief. However, the immediacy and immer-
sion given in crisis lengthen Quite clearly, a subjectively
it.
experienced crisis also necessitates remaining alert and in-

volved in what happens. This awareness and involvement
yank people out of the past and force them into the reality of
the present (cf. Flaherty 1987). Otherwise, crisis may be exter-
nally imposed but subjectively experienced as an improbable
present.
Gloria Krause believed that her previous episode of Hodg-
kin's disease precipitated her bleeding ulcer. Her story illus-
trates a rapid shift from past to present, and how more serious
crises successively topple upon each other. Gloria's crisis oc-
curred while she was already However, she
in intensive care.
dreaded shifting from medical treatment to surgical interven-
tion. To her, it meant changing from a qualitatively different
past to a dreaded present. She had hemorrhaged four times in
five days. Each time staff thought that they had stopped her
bleeding. Then, she hemorrhaged again. Facing yet another
surgery threw her into a new and more horrendous crisis than
the past five days of intensive care. For her, facing surgery
again seemed worse than facing death. She recounted:
I cried and cried and said, "Dr. Overby, I don't want surgery
because it takes you so long to heal from surgery/' and they

. . .
—
did a scope and he I mean his eyes looked at mine and he said,
"Gloria, the hole in your stomach is as big as my fingertip. " I
mean I had a hole and the blood was going out of this body . . .
and I was just begging him not to have surgery. ... He said,
"The bleeding is not going to stop. You have to have surgery
you have to go in." ... I mean he looked at me with such seri-
ousness in his eyes, you know, and I knew, and I said, "When
are we going?" It's like you're not going to think about it, the
decision has been made. And you are not going to rebleed and
rebleed and rebleed. He said, "You're going into surgery right
now, right now." I mean it was like midnight.
An agreed upon immerses everyone involved in the

crisis
present. Durations speed up when involvement increases in
amount and intensity. When people feel overwhelmed by the
enormity of crisis, they handle it in small pieces by concentrat-

ing on the details.
During a crisis, the present teeters with uncertainty and the
future seems remote. While drawing participants into the exi-
gencies of the present, a crisis simultaneously pulls people into
a future. But they cannot reflect about what this future might
reveal. Thus, images of the future remain vague and elusive.
Moreover, when fear of death clouds the future, other, perhaps
more accurate, images of the future may be precluded.
A crisis allows people to delve into the present and to avoid
thinking about what looms in the future. Carobeth Laird, an
elderly woman with multiple medical problems, writes, "As
long as I was in a precarious condition, I didn't think of the
future" (1979:14).
Although a crisis engulfs everyone in the present, paradoxi-
can offer them relief, a reprieve, from the immediate
cally, it
past. Immediately after suffering a CVA, Eric Hodgins recalls,
"Once in the hospital bed I had a sense, almost, of elation. Here
Iwas, and everything was somebody else's problem now. What-
ever I had to do within the next immediate days would not get
done and it wouldn't be my fault. Some problems that had been
troubling me deeply for months would now not get solved; I
was out of commission and my helplessness was almost pleas-
ant" (1964:13).
For years, Gloria Krause had struggled to make a living by
selling used clothes while she tried to develop a modeling ca-
reer. She also struggled to form lasting ties with Greg, who
flitted between her and another woman. When another crisis
removed her from her struggles, she observed, "There was no
pressure on me at all; that was kind of nice." Becoming eligible
eased her earlier worries about how
for a small disability benefit
to pay for food and rent. One whole set of nagging pressures
evaporated.
A crisis or sudden onset is a searing disruption. Loss. Pro-
found loss. The disruption not only attests to loss of health, it
threatens loss of self and way of life. The loss may force
dreaded changes of relationships. Thus, a searing disruption
casts unwelcome shadows on the future —
long shadows.
Audiences of Interruptions
Other people watch what happens as someone becomes ill;
they become audiences. They also play important roles. They

affect whether illness becomes defined at all, whether it is de-
fined as an interruption, what type of interruption, and what, if
anything, it means. As observed earlier, ill people grant some
individuals much more credence than others in defining the
onset of illness. Credibility turns on authoritative status, type
of relationship, amount of concern, and possession of informa-
tion. Other people certainly affect when an individual defines
possible illness. An elderly woman ignored her symptoms until
her daughter insisted that she seek medical attention. Men com-
monly sought help only after their wives nagged, cajoled, or
even threatened them. One wife whose husband delayed and
refused said, "Oh yes, he went to the doctor after I told him, 'If
you don't go, I'm leaving.' "
Defining illness is pivotal for those whose lives are inter-
woven with the person. Wives, particularly, scrutinized their
husbands' behavior for signs of sickness. Subsequently, their
persistence in defining illness resulted in their husbands' medi-
cal workups, hospitalizations, and consultations with special-
ists. A gay man's diagnostic search eventually led to chronic
fatigue syndrome. He said, "Two of my friends were sure I had

AIDS. They were really important in getting help. I was so out
of it then [he had experienced confusion and disorientation]."
Once illness is defined, family and friends play crucial roles
in monitoring it. When they learn how to define symptoms,
they may prevent or forestall potential disruptions from oc-
curing. For example, one woman's astute observations saved
her husband from another stroke. The disruptions can be social
as well as physical. A middle-aged man discovered that his
uncontrolled anger toward his young children routinely oc-
curred when his blood pressure skyrocketed. Taking his medica-
tion caused his blood pressure to drop and his temper to fade.
Having that information eased conflict in his family and, simul-
taneously, prompted his wife to monitor his condition.
Ill people weigh their audiences' reactions against their symp-
—
Chronic Illness as Interruption « 37

toms, immediate concerns, and responsibilities. All are played
out against the backdrop of their prior conceptions of illness.
Hence, an ill person may be pushed and pulled in different
ways. For example, Lara Cobert's friend and her elderly father
both pushed her to seek help. But her own prior conceptions of
health and illness and "natural" inclinations fostered delay. An-
other trusted friend, a nurse, bolstered her decision not to seek
help. Lara said, "Well, see my friend's a nurse, and she's a
really good nurse, but when it's her own friend she tends to
she doesn't want to scare you. And she said it was proba-
. . .
bly just short-term and to watch it so I mean, you know, I really

trusted Pam [the nurse]. So I just watched it for awhile."
Lara Cobert's primary audience, the nurse, justified handling
disturbing symptoms like Lara had handled past acute ill-
nesses. For her, illness provided a handy excuse when she had
too much to do. Otherwise, she did not allow herself to be sick.
Her harried life combined with her ideas about illness disin-
clined her to define it as interrupting her life. Lara remarked, "I
was raising four kids by myself and working at this and that,
anything, you know. I was too busy to notice too much."
Throughout the entire course of illness, ill people distinguish
between private and public audiences. Private audiences gener-
ally know the latest news of someone's illness and how he or
she thinks, feels, and acts about it. Public audiences only know
slices of this person's experience. They may know the diagnosis
but little or nothing about what the person thinks, feels, and
does about it. Sometimes, however, a public audience has scant
knowledge about the illness but witnesses how the person
deals with it. For example, a neighbor of an elderly man only
knew that he had diabetes, but unlike his daughter, knew that
he drank heavily because she saw his bottles in the recycle
container.
By very nature, illness remains a private, family affair for
its
many people. Their relative willingness or reluctance to pro-

vide friends and associates with details measures the degree of
intimacy that they feel. However, they may reveal more to their
practitioners than to acquaintances or associates. Hence, some
public audiences become private. Events can throw nurses into
telling moments with patients. Physicians occasionally know
more than spouses and adult children about how illness inter-
rupts a patient's life. A hairdresser may know more about an
elderly woman's health than her adult daughter.
Absent audiences form shadow figures who ill people believe
could materialize and dominate their lives. For example, a di-
vorced woman had another serious episode but tried to define
it as a minor disruption. She did not want to give her ex-
husband cause to reappear and take the children.

Other audiences do not play their expected roles. Rather,
they remain uncommitted, uninterested, or after several crises,
expended. Occasionally, people have an illness or face a medi-
cal procedure that they believe disrupts their lives. But their
friends and family do not. For example, the daughters of a
heart patient discounted his latest crisis for his fear had resulted
in more panic, rather than heart, attacks. Continuous emergen-
cies (Robboy and Goldstein 1987), whether "real" or feigned,
psychological or physical, self-induced or physiologically deter-
mined, grind away most sources of help and recast them as
distant audiences.
Public audiences remain concerned and involved as long as
they also can define the illness as a single interruption. But if it
continues or reoccurs, their interest wanes and their attention
dwindles. Furthermore, an initially sympathetic audience may
even become antagonistic as their stance shifts from sympathy
to irritation to condemnation. A middle-aged man gleaned that
his co-workers thought he received undue favoritism from their
supervisor. Although initially concerned, steady customers la-
ter terminated their orders from a salesman who was recouping
from a heart attack. A nurse's co-workers assisted her when she
first came back to work, but when she did not regain her earlier
speed, they requested that she be transferred off the ward. In

short, victim-blaming occurs when illness challenges the audi-
ence's taken-for-granted notions of temporary inconvenience
and recovery.
As the ill person expands informal networks and seeks
more help, professional involvement escalates. In a young
woman's case, greater and more serious entanglement in
medical and welfare institutions resulted. She told of seeking
welfare assistance:
I
Chronic Illness as Interruption m 39

I thought they would give me the money to live on since it was
obvious I wasn't able to work so they suggested a colostomy
which was horrendous and they also, when I turned that down,
said that they would send out a woman to talk to me. ... I
didn't have any formal thing done but she would come once a
week at lunch time and talk to me at work and I hated that —
wasn't getting any money . and so the next thing I thought to
. .
do was to go back to the hospital and say, "Look I still have it,"
and they said, "Fine, we have to run you through the tests again
because there's a chance you've gotten an ulcer by this time."
Occasionally, quasi-public audiences not only know about

the person's illness, but also may allow the person to be sick.
Private audiences may Joanne Dhakzak, who had Hodg-
not.
kin's disease, lived separately from her husband in order to
receive treatment at the major medical center several hundred
miles from their home. She said that he could not accept her
infirmity from surgery and radiation. Nor could he understand
why her trailer was untidy, the dishes unwashed, and the laun-
dry unsorted. So on weekends when he visited, she was
"well." She hiked, attended movies, and explored restaurants
with him.
Her actions resulted in three consequences. First, the staff
knew and understood her reduced physical state and decreased
stamina better than he did. Second, his attitude spurred her to
feel responsible for herself and her recovery. 3 Third, she risked
her health, even her life, to meet his expectations. For example,
she hiked with him in deserted foothills while she still had
stitches from major surgery. By her own account, had those
stitches ruptured from exertion, she surely would have hemor-
rhaged to death.
Private audiences vary over time as the structure, relative
intimacy, and geographical distance of the ill person's relation-
ships vary. For example, Goldie Johnson's adult children had
moved away years ago. When she became sick, her third hus-
band planned her care.Her younger daughter, a home health
aide, discovered that Goldie was overmedicated and that her
husband planned to put her in a nursing home. She insisted
upon moving Goldie to her own community. The daughter
said, "I figured I cared more about her than he did. I would
have done something sooner, but being two hundred miles
away, I didn't know what was going on." Goldie's husband
was soon stripped of any decisionmaking power since she di-

vorced him upon relocating.
Thus, a shift in private audiences can result in radical redefini-
tion of illness and of ideas for handling it. Goldie Johnson's
story illustrates how an incurable condition can be redefined as
an immediate crisis meriting amelioration. Shifts in private audi-
ences, particularly when aligned with physicians, can construct
or deny, expedite or delay, stress or obscure definitions of ill-
ness. As a result, what the ill individual experiences depends

upon whether powerful external definitions coincide with his
or her bodily sensations. And in sum, to the extent that power-
ful others deny, delay, or obscure definitions of illness, the
likelihood increases that ill people will also discount their symp-
toms and themselves or, at most, define their sickness as a
temporary interruption.
3
Intrusive Illness
What's a good day now? There no good day. Well, a good day is . . .
now is you know, there are never days

sort of a neutral day. That's
when I have almost never when I have lots of energy and run
. . .
around! .I really don't pay that much attention [to my body], and
. .
never have. I do pay more attention now because I am limited [by

severe emphysema]. I don't know if you could say I monitor; I
. . .
observe [laughs]. Yeah, I'm forced to observe it.

It's [his emphysema] accelerated . . . I mean there has been a decline
in the last couple of years from Point A to Point B but I haven't noticed
all that much. . . . I'm doing less than I did before . . . right before I
moved here. But, you know, living within the parameters [here] you
know, you just don't notice it. But on reflection, I think that it proba-
bly has been. . . . I don't have the vitality that I did. . . . Up until I
was in my early forties, I kept my world view and my view of myself as
a young person. And now, it's, you know, pretty radically differ-
. . .
ent as far as I am concerned all of a sudden [7] see myself as an . . .
invalid [laughing], you know, an old invalid.
I asked, "How is that for you?" He said:
It's no picnic [laughing]. Yeah, I guess you come more to grips with
your mortality and it's not that I'm afraid of imminent death or even
long-term —
7 don't think about it that much, but it makes me . . .
realize that there is not an endless lifeahead of me. . . . My God, here I

am in this position and . . . it'll be a lot tougher to get out of than
formerly. . . . I don't know how much more time, you know, I could
have a bad winter and get pneumonia and die. . . . I have a hard
enough time breathing without that so ... I see my dying as much
more of a possibility than I did a few years ago.
41
Slow in pace. Low in energy. Short of breath. John Gars ton's
former daily round receded into the past as his emphysema
progressed. His apparent ease in moving around his tiny cabin
belied how hard he found it to walk around his favorite flea
market, or to climb a staircase, or even to manage the short
distance to his mailbox. At forty-six, John's aging rapidly accel-
erated and death drew closer.
John Garston's illness had become intrusive. He could not
ignore it. It cut into his life and circumscribed his choices. None-
theless, he with it (cf. Fagerhaugh 1975).
tried to live
What is it like to live with unremitting symptoms? What are
"good" days and "bad" days? How do people accommodate
and adapt to their intrusive illnesses? What stances do they
take toward having an intrusive illness? How does being ill
affect relationships? How do ill people try to keep their illnesses
contained?
An intrusive illness means that the effects of illness con-
tinue; they do not simply disrupt ill people's lives temporarily.
Granted, definitions of intrusiveness differ. What one man or
woman defines as intrusive, another might define as a routine
inconvenience, to be wholly discounted, and still another
might see as causing immersion in illness. I take felt and de-
fined intrusive illness as my starting point. 1
From people's views, an intrusive illness forces them to

ill
accommodate to it, or to suffer the consequences, which can be

both immediate and devastating. How they accommodate to
their illnesses shapes whether or not they can live as they
choose.
Definition of Intrusive Illness
An intrusive illness demands continued attention, allotted

time, and forced accommodation (see Charmaz 1984; Corbin
and Strauss 1988; Locker 1983; Maines 1984; Schneider and Con-
rad 1983; Strauss et al. 1984). When intrusive, illness becomes a
permanent, if not always salient, part of life. People learn to
expect symptoms and treatments, and to plan around them.
Intrusive Illness 43
These people struggle, often successfully, to minimize the intru-

sion of illnessupon their lives.
Though specific symptoms and episodes may be unpredict-
able, illness has become predictable. It affects people's daily
round of activities (Brooks and Matson 1987; Locker 1983; Mor-
gan 1988; Peyrot, McMurray, and Hedges 1987; Plough 1986;
Reif 1975; Schneider and Conrad 1983; Strauss et al. 1984). Keep-
ing an illness a secret becomes troublesome, even when it is
invisible. In addition, intrusive illness takes time for symp- —
toms, for symptom control and prevention of flare-ups, for
handling prior activities more slowly. Consequently, illness
forces a new awareness of and relationship to time (Maines
1983).
Simultaneously, illness forces self-consciousness. Symptoms
or episodes jolt active individuals' awareness of illness. They
know, feel, and account for their intrusive illness. A young
woman with multiple sclerosis described her intrusive symp-
toms way: "if it's like when I am really tired or some-
in this
thing, I just simply can't do as much. My leg won't work or
. . .
something, and I just fall a lot."

Thirty-six-year-old Christine Danforth still worked despite
having lupus erythematosus, Sjogren's syndrome, and the re-
siduals of a serious back injury. In addition, she had to attend
night classes to remain qualified for her job. Here is her account
of how her conditions affected her:
There's a lot of things I can't do. When I go to night

. . .
school ... I have to go straight home to lay down before I do, or

I can't go, where, you know years ago I wouldn't have had to do
that.
And I have really had problems with lights. I can't be in a
room that has fluorescent lighting without wearing special glas-
ses. So, ifI go to class at night and I have to sit there with
sunglasses on, then that makes me even more tired. It makes my

eyes swell shut. And I've also missed three classes and be-
. . .
fore I've never missed class.
Intrusive illness threatens control over self and situation,

and results in uncertainty (Bury 1982; Locker 1983; Robinson
1988b; Skevington 1986; Strauss et al. 1984; Wiener 1975).
When people define their illness as intrusive, they often view
their control over it and over their lives as tentative and lim-
ited. A threat of loss of control also threatens loss of self
(Charmaz 1983b). Thus, these people work to manage their
illness and thereby exert more control over their lives.
Setting markers of acceptable levels of illness leads to defin-
ing anything further as overly intrusive. For example, a young
physician with diabetes informed me, "The only time I get
pushed out of shape is when I have to get up (at night) and give
myself a shot. I get annoyed, I see it as an intrusion; otherwise,
I don't. Then I have to figure out what to do."
Experiencing Intrusive Symptoms
Experiencing intrusive symptoms disrupts usual activities.

Discomfort or potential threat of illness remains constant and
cannot be dismissed (Bury 1988; Cobb and Hamera 1986). Two
years before Vera Mueller began taking heart medications, she
had intensified cardiac symptoms precisely when demands
upon her escalated. She said, "I just don't want to think about it
[her heart condition] and I resent it now that it keeps intruding
"2
into my way. It gets in my 1 asked, "How does it get in
way.
your way?" She replied, "I have to think about the chest pains.
They are there. I have to think about the fact that I haven't slept
in two days. I have to think about the fact that, whoops, I didn't
eat anything and I am smoking too many cigarettes and that I
shouldn't be eating all this salt and that maybe I'd better make
an appointment with the doctor and getting me to the doctor is
like pulling teeth."
Intrusive symptoms permeate routine activities and interrupt
the rhythm of the day. In short, symptoms cause problems that
spread, like a cold in a grammar school class. Heather Robbins
disclosed, "I have a problem; if I do trip, I can't catch myself. I
know I'm going to land on him [baby] one of these days, or [on]
her [toddler]. I've already stepped on her numerous times and
things like that. ... I feel terrible [about it]."
Experiencing intrusive illness leads to efforts to control

symptoms and to prevent further symptoms and problems
from developing. In turn, symptom control often requires con-
stant effort. Frequently, social, rather than health, reasons
spur this effort:
So I can continue to parent.

Because I don't want to be out of work again.
To keep my ex-husband [an abusive alcoholic] from getting
the kids.
So I never have to ask for help [public assistance] again.
Controlling illness means controlling time and, moreover,

emerging identity. By controlling
identity, people maximize
self-worth. That means keeping illness in the background,
rather than in the foreground, of their lives. One way to control
intrusive symptoms is to rest. Many of my respondents had to
work (cf. Brooks and Matson 1987). They structured their day
to enable them to keep their jobs, using any free time to recoup
from work. Christine Danforth remarked, "I always try like if —
I have to do something or I have to go somewhere, I try to do it
always on Saturday. I like to leave Sunday to stay home and do

nothing, because if I do something on a Sunday, even if I have
Saturday free ... it really makes me tired the rest of the week."
Resolving to preserve independence and self-worth encour-
ages many people to try to control symptoms and, occasionally,
the disease, and to avoid acute illnesses. 3 At times, the strate-
gies themselves spur a chain of events that end in immersion in
illness. For example, a woman took more medication than pre-
scribed to mask her symptoms, although doing so accelerated
her disability, which caused her to become housebound within
two years. If someone's fragile control over illness shatters,
then all the ways of trying to have a valued self flounder. Acute
conditions drain strength and endurance, and therefore control
over intrusive illness plummets. Not only does health deterio-
rate further, but also, the ill self, which had managed illness
more or less effectively, is lost.
"

"Accepting" Intrusive Illness
What does intrusive illness mean to ill people? To what degree

do they accept it? What does acceptance mean? Is it, as com-
monly believed, a necessary prerequisite for moving on with
one's life? Both having the illness and attempting to continue a
former life raise questions about "acceptance." In turn, the de-
gree of acceptance suggests crucial assumptions about intrusive

illness. Acceptance means agreeing to one's status without strug-
gling and without envy, sorrow, or anger (Kubler-Ross 1969). I
discovered four ways people respond to illness in relation to
acceptance. 4 They ignore illness, they struggle against it, they
reconcile themselves to it, and they accept it. Ignoring illness
means overlooking it, or more accurately, looking over and be-
yond illness. Few people who try to continue a packed life can
ignore direct discomfort or subsequent symptom management,
though they may not handle either in medically approved ways.
However, people rather readily ignore an invisible condition
with vague, or minimal, symptoms, at least for a time (Siegler
and Osmond 1979). Several men with emphysema and heart
disease echoed this man's statement, "Mostly, I ignore it until it
gets in my way.
Suffering or infirmity forces noticing illness when it interferes
with or limits valued activities. John Garston said, "So I ignore
it when I don't feel bad, you know, which is not often. ... I
mean if I'm just sitting here, sometimes I'll be wheezing; some-

times I won't. But if I get up to do anything, I'll naturally feel it.
So I do ignore it quite a bit less than I did before."
Other people struggle against their illness (Charmaz 1987). A
cerebral-vascular accident left a sixty-year-old man with a right-
sided paralysis, slurred speech, and aphasia. But it did not
dampen his hopes for and his efforts toward a full recovery.
Though occasionally he could not control his anger about his
condition, he vowed that he would struggle until death, if need
be, to regain his speech and mobility. His CVA became his
personal enemy to confront, to challenge, and to conquer.
When Bonnie Presley discussed acceptance, she had had lu-
pus erythematosus for two years: "I'd rather be making a lot of
Intrusive Illness s 47
money and I'd like to have more energy, but I've reached a
balance and I've accepted an illness and I'm working around it.
—
When I'm tired I I go to bed. Even if it's at 2:00 in the after-
noon." I asked, "What does acceptance mean to you?" She
replied, "Accepting that I'm not what I used to be." One year
later, her health had improved and she had revised her stance
on acceptance: "I have to admit that I accepted it and after I got
over accepting it, I think it was then that I started thinking, 'Do
I have to accept this? Isn't there anything I can do?' "
really
As Bonnie Presley's remarks suggest, acceptance shifts and
changes as experiences, plans, and prospects change. Cer-
tainly the extent of illness, type of treatment, and current
prognosis affect acceptance. So does the type and amount of
support someone has. For example, a middle-aged woman
reported that her lover dreaded her possible heart surgery
because the scars would repulse him. As a result, she too
rejected the procedure.
People may avow that they accept illness when it remains
quiescent. Ill people may also accept some residual disability,
as they learn to live with it, but they are unlikely to accept
sudden declines with uncertain improvement. Patricia Ken-
nedy remarked:
Don't think that I've been real passive about accepting this [her
multiple sclerosis] because I haven't and I don't think I've gotten
to accept it . . . and
I don't know, Kathy, if I ever will. I accept it
really fine when

I'm in remission, [imitates her offhand stance
then], "Oh, I have it" [and it's nothing] but not when I'm not . . .
when it interferes with my life, when I want to go to class, when

I want to study, when I want to do something other than be in
this space [home].
Most people reconcile themselves to their illnesses. Reconcil-

ing means tolerating illness. It means acknowledging and han-
dling pain, slowness, or fatigue. It means following a regimen
or creating a routine to manage or mask the symptoms. In
short, people decide to live with their illness (Corbin and
Strauss 1988). They acknowledge the presence of their illness
and attempt to accommodate to it. John Garston stated: "I just
found it easier when I stopped fighting it." Another man re-
marked, "I can live with these symptoms, if that's all."
Hence, acknowledgment of illness lies within "acceptable"
limits or boundaries. Accepting anything beyond those bound-
aries seems beyond human capacity. These views spawn tacit
bargains to devote time and effort to handling illness within the
set limits. People who do so often had bargained earlier to keep
the first interruption of illness limited to one episode. At this
point, they resign themselves to the presence of illness and
bargain about the extent of it.
Lara Cobert refused to accept a foreshortened life and pro-
gressive disability from myasthenia gravis. Five years after her
only episode, she said, people die of complica-
"Usually,
tions. . But I never thought about that [dying] very much
. .
because I never really accepted it. Suddenly, there's an immedi-

acy about putting effort into getting well. The future be-
. . .
comes dealing with the disease."

When ill people reconcile themselves to their illness, they
may do so only as they experience it in the immediate present,
but not the future. Thus, a man declared: "I can tolerate this
situation for a short amount of time, say two years, but at the
end of it, that's it." In addition, ill people may reconcile them-
selves to one set of symptoms or routines but not to others.
Reconciling oneself to illness differs from accepting it. Recon-
ciling means accommodation to the extent that these men and
women can tolerate. "I adapt to my illness now. In that way, I
adjust to it, but I'll never accept it." Acceptance shapes the
future as well as the present. It assumes accepting the identities
others deem to be "appropriate" for them (Charmaz 1987). In
contrast, reconciling self to illness means rejecting identifying
stereotypes others cast upon those with chronic illness. These
illpeople also reject practitioners' pronouncements that strip
them of hope. "You will get worse." "You'll end up in a wheel-
chair." "There is no cure." Though she had reconciled herself to
multiple sclerosis, Patricia Kennedy said, "I look for a cure."
Examining the degree of acceptance reveals ill people's views
of self and their implicit theories of identity (Charmaz 1983b;
Strauss 1969). Their degree of acceptance reflects the amount of
assault upon the self that they can tolerate. Further, it reflects
their limits of defining self and of being identified by others.
"Good" Days and "Bad" Days
Dividing life into "good" days and "bad" days provides one
measure of experiencing an intrusive illness and a part of the

taken-for-granted lexicon through which illness becomes under-
standable and explainable. Differentiating good and bad days
in illness reflects a more intensified, focused version of evaluat-
ing days more generally such as in work, child care, and love.
Good days and bad days also implicitly concede the limits of
self and reveal images of self. Telling identifications emerge.
What assumptions lie embedded in good days and bad days?
What kind of experience do the terms denote? How does a
"good" day, contrast with a "bad" one?
Most fundamentally, ill people define good and bad days
according to their evaluations of the amount of intrusiveness of
illness. The relative presence or absence of symptoms figures
here. Ill people weigh their symptoms as they learn which ones
they can dismiss or ignore. Certain symptoms may remain
more or less present but vary in severity and intrusiveness.
Hence, the amount of suffering and infirmity that ill people
experience differentiates good and bad days.
Subsequently, suffering and infirmity create other important
criteria for evaluating the day, such as the amount of time taken
for illness and regimen. In addition, the kinds of activities pos-
sible, amount of productivity, degree of choice, and amount of
control all figure heavily in evaluating the day. These criteria
flow from the initial assessment of the amount of intrusiveness.
When intrusiveness is low, most people have more choices and
can exert greater control over them and over themselves. Con-
versely, when intrusiveness is high, choices narrow, and ill
people have less control over them and over themselves.
Intrusive illness may lead to loss of control (Schneider
and Conrad 1983). The relative visibility, embarrassment, or
stigma produced by illness or the subsequent loss of control can
significantly define a day. Feelings of control, and therefore of
personal competence, shape whatever definition one makes.
Definitions of good and bad days result from juxtaposing and
comparing one day with another. Decided disjunctures be-
tween the types of days lead to developing precise, explicit
definitions of good and bad days. An elderly woman with can-
cer remarked, 'Today's a good day, but yesterday was hell/'
Evaluations of days are fundamentally intertwined with eval-
uations of self. Ill people measure the quality of the day against
the self they recognize, acknowledge, and wish to be. Thus,
they judge whether the day is consistent with the self they wish
to affirm and to present to others.
A "Good" Day
A good day means minimal intrusiveness of illness, maximal

control over mind, body, and actions, and greater choice of activi-
ties. Ill people concentrate minimally, if at all, on symptoms and
regimen during a good day, or they handle them smoothly and

efficiently. Illness remains in the background of their lives. Spa-
tialand temporal horizons expand and may even become expan-
sive during a good day. When illness abates, people have much
better days. Like ex-convicts just released from jail, they may
wish to make up once for lost time.
all at
A single mother's temporal horizons had consisted of physi-

cally getting through the day and financially keeping her chil-
dren fed throughout the month. Her spatial horizons had been
limited to the distance between her bed, the bathroom, kitchen,
and living room in her tiny apartment. When she began to have
good days, her temporal horizons lengthened to ideas about
how she wanted her family to live in the next few years and
what kind of a future she desired for herself. She exclaimed in
wonder, "Before, I dragged through the day, wondering if I
could get through it. Now I have a whole life in front of me."
During her past bad days, she had felt locked into an uncontrol-
lable present. As the possibility of a long future stretched out
before her, she began to see a chance of exerting control over it.
In short, expanding time horizons characterize a good day.
Intrusive Illness h 51
Good days are, of course, relative to an ill person's criteria
and experience of chronic illness. For some people, a good day
means functioning as they had before illness became intrusive.
Quiescent or controlled symptoms contribute to feeling rela-
tively "normal" between exacerbations. Definitions of a good
day shift and change according to the progression of the illness.
For Patricia Kennedy, who had had debilitating flare-ups of
multiple sclerosis, "A good day means to be able to get up and
get out of bed by myself, to eat breakfast, to shower, now it
means to go off to school, to participate in class, to rest and
then go on [with household and family tasks]."
Definitions of a good day derive from a sense of being in
character, being the self one recognizes and acknowledges. On
a good day, ill people have more opportunity to be the selves
they wish to be. In addition, on a good day, the earlier jarring
questions about present self, the doubts, the eroded confi-
dence, and the nagging fears about the future all recede into the
past, or may be completely forgotten.
A "Bad" Day
A bad day means intensified intrusiveness of illness, less

control over mind, body, and actions, and limited choices about
activities. Illness and regimen take center stage. On a bad day,
people cannot ignore or easily minimize illness. Further, their
intensified symptoms may then elicit uncontrolled feelings.
Christine Danforth, the receptionist with lupus erythematosus
and Sjogren's syndrome, described a bad day: "I find that I'm
really a lot more tired than, you know, have a regular
if I just
day. I have a lot more memory loss, ah, frustration and then I
get depressed and angry. ... I just blew [up] that day."
Frustration marks a bad day and leads to fury, often at self.
Lara Cobert recalled her bad days:
My speech would slur a little bit,

I get really pissed off, or I'd go
to picksomething up [and drop it] ... I mean I got really annoyed

when I dropped things and that was counterproductive only it
didn't do me any good to get annoyed. George [her partner]
would point out that getting angry at myself didn't do anybody
much good. hard to accept things like that and you don't
It's
want to accept them on one level or on the other, there's no point

at being angry. So, I guess I felt angry at myself, at my body.
Spatial and temporal horizons shrink on a bad day. When

people take for granted that their activities will be curtailed,
they voluntarily limit their spatial and temporal boundaries.
When they struggle to remain active, they test and measure
exactly what their spatial and temporal boundaries are. Patricia
Kennedy stated, "On a bad day I can't get up, I have to stay
home — —
have no choice. I have symptoms yes, [no] strength,
I
lack of balance. It's hard for me to go out —

I only go to safe
places. Thrifty's [a store] too crowded —

too many visual stim-
uli, too confusing. Somebody may knock me over. On a . . .
bad day either I need to go with someone or take a cane. I know

I should stay home and rest. On a real bad day, I can't do
anything."
Like many other ill Kennedy graded bad
people, Patricia
days. Her bad days changed when her illness
definition of
flared. She commented, "I deal with time differently and time
has a different meaning to me." She added that, "being sick is a
waste of time," because it profoundly reduced time for tasks or
for personal goals. Bad days elicit anger and frustration because
they negate being one's preferred self. Bad days reflect a frus-
trating and frightening self, a self that limits the present and
might foretell the future.
How do people handle bad days? They revise expectations of
selfand of the day downward. For example, some ill people try
touse the day for undemanding tasks. By revising the day down-
ward, they try to prevent bad days from becoming "lost" days.
Spatial and temporal boundaries can shrink so radically dur-
ing a bad day that ill people seem to sink into self. In turn, their
boundaries for interacting and functioning steadily contract. As
people sink into self, they experience a kind of self-involvement
that probably feels alien or distasteful. Under these conditions,
people feel out of self. That is, the self presently experienced
bears little resemblance to someone's "real" or "ideal" self.
Hence, ill people often say, "I'm not myself today."
Intrusive Illness m 53
By saying to her housemates, "I am not myself today/' a
young woman with colitis alerted them to her bad day. She and
her housemates had tacitly agreed that she needed to make no
other verbal acknowledgment of her illness than such a state-
ment. Through informing them, she requested them to reduce
their expectations of her. Their acceptance of her illness and the
ways she handled it minimized possible strain.
Not everyone, however, is able or knows how to smooth
strained interaction (Davis 1961). Instead, fear, anger, or self-
pityconsume these people. Their immediate self-concern floods
other interests and ordinary interaction. They feel that they can-
not attend to conventions and courtesies. Family and friends
may not understand the ill person's experience, or may discredit
it. "He gives into it; he's being a baby." "Everyone's disgusted
with her, she won't do anything for herself." Subsequently,
these people have to contend with all the negative responses to
them and whatever feelings those responses evoke in self pre-
cisely when they are having a bad bout of illness.
Shifting Criteria
Criteria for good and bad days shift as someone's condition

improves or worsens. Good days become much better as health
improves or treatment works. Earlier, ill people may have "nor-
malized" discomfort, fatigue, or pain that permeated even their
good days (Davis 1963; Wiener 1975). Thus, how much better
they feel startles them. Six years ago, Vera Mueller had some
bad days. Receiving medication and losing weight revised her
days upward. She said, "Health-wise I'm fine. Actually I
gained thirty pounds and then dropped fifty. I feel good, better
than I have in years; I feel strong. .I'm more active; I don't
. .
get tired. The weight was really weighing down on me and I

was having a lot of chest pain I didn't acknowledge. I didn't
know it was there. I didn't realize it was there until it was gone.
[Relates her wonder.] 'Oh it doesn't hurt. Oh, how surpris-
ing.' . . . I've just got a ton of energy I've never had before."
As illness progresses, this process works in reverse. A bad day
gets worse — sometimes dramatically so. Similarly, the criteria
for a good day also shift downward. Ironically, an earlier bad day
can become a good day. For an elderly man with emphysema, a
bad day eight years ago was a day when he experienced short-
ness of breath and fatigue when out in the yard. Five years later,
a good day meant being able to move from the bed to his chair.
Similarly, John Garston observed, "What used to be bad days
[laughing] are —
now, they are good days but the quality of . . .
things, I think, is declining, you know, from, say a couple of

years ago when I didn't think about it that much. And there
would be isolated days when I had a lot of congestion and things
like that. But that's all."
Cycles of quiescence and flare-ups foster noting how mean-
ings of a bad day change. Patricia Kennedy explained:
My daily regimentation is altered during exacerbation in that it
takes me longer to do everything. It takes me longer to get out of

bed, I haveto get out, sit on the side of the bed, then get up. It
takes melonger to shower. It takes me longer because I just . . .
move much slower. And then as the day progresses, I have to

build into that day [that] which I do all the time, an exercise
program which takes say an hour currently ... it takes me

. . .
an hour and a half to an hour and forty-five minutes; it's a big

chunk of the day. Often, during exacerbation, I need to lie down
and allow myself to rest for two hours a day and at that time,
also, I need more sleep, I need twelve hours of sleep a night. My
day is shortened ... by what I need to fit into the day. Then, in
addition, it's shortened because activities take me longer. . . .
My time is almost regulated by the symptoms of exacerbation.
Patricia Kennedy had to take her symptoms into account;

they intruded upon every part of her day. Whether or not self
and others acknowledge bad days is crucial. Lesser bad days
allow for more elastic definitions. What an ill person will allow
to stand as a bad day, what significant others will confirm, and
what everyone defines as a bad day can vary. For example, a
woman did not discern a bad day until her symptoms became
quite marked. Neither she nor her husband could tolerate sick-
ness or sick people, so she neither talked about it, nor even
defined it, until she was caught by it. (She also could plan and
pace her day almost exactly as she wished.) Thus, the social
.
context and meanings of illness shape definitions of good and
bad days.
The social structuring of the day can turn a good day into a
bad one. For example, Christine Danforth might have started a
day feeling all right. However, the structure of her day ex-
pended her physical limits and mental acuity. The day moved
too fast for her. Too many distractions disrupted her concentra-
tion and impaired her productivity. She began to have memory
problems and made mistakes. She could not handle the flow of
work. She remarked, "It's [the work day] sometimes worse on
days where most of our staff now are part-time, which makes it
a lot harder on me because when they're not there, I have to
take more messages and more lengthy messages, so I get very
frustrated and I have bad days when that happens."
When a cloak of silence surrounds illness, participants will
not talk about the bad days until they are in the past, even
when their actions acknowledge them. If someone's health
takes a turn for the better, then others' acknowledgment of the
earlier bad days becomes apparent in their congratulatory re-
marks founded on astute comparisons of the person then and
now.
As illness grows more intrusive, bad days become certain,
expected, and predictable. Yet exactly when they will occur
and where they will lead remain unpredictable. These proper-
ties give an interesting twist to the concept of uncertainty.
Ordinarily, it refers to progression of illness from the vantage
points of both the physician's prognosis (and often, treatment
choice) and the patient's experience of debilitating symptoms.
But in these cases, "uncertainty" is persistent, continual, and
anticipated
— "certain"
May Morganson, who had renal failure, described her unpre-
dictable, yet certain, bad days in these words: "Fortunately, it
doesn't happen too often. I mean, you know, it's not like every
day, every day after dialysis. But it's sometimes one or two days
a week. And then lots of times they'll —
in fact quite often, the
dialysis patients have to have blood transfusions. And usually,
I don't feel very well for a couple of days after a transfusion."
Though May Morganson could not predict exactly which

days would be bad days, she did develop a timeframe for them.
Later, she disclosed that in fact the bad days occurred each
week, and lasted for several days. As a consequence, she re-
mained sick much of the time. She felt that she couldn't plan a
—
whole week ahead her bad days simply knocked her out, so
much so that she could not complete even minimal self-care
tasks. May Morganson's anticipated but unpredictable bad
days, which usurped her life, led her to live almost totally in the
present. 5 She did so because living in the present muted and
minimized her illness.
Certain bad days lead to a life founded on illness or immer-
sion within it. As such, they occupy the frontier between the
borders of intrusive illness and immersion in it.
Spiraling Effects
Intrusive illness has spiraling effects that, in turn, further in-

trude upon life. Among these effects are the consequences for
valued pursuits and self-images and interpersonal relationships.
How and what the illness preempts, when and how long it
preempts, and its predicted duration all figure in whatever
stance and strategy the ill person takes toward it.
How illness intrudes upon anyone's life affects definitions of
it. Persistent, yet relatively invisible, symptoms make it pos-
sible to prolong the period before preempts valued pur-
illness
suits and self-images. Six years ago, Tina Reidel kept working
despite being in constant pain from arthritis. During this time,
she described what her body felt like: "It takes all my concentra-
tion just to keep my body going. And I feel like I'm walking
around on crushed eggshells and I have to protect my body all
the time. . You're walking down the street ... no one can
. .
tell. It's real, like a paradox. No one can tell there's anything
wrong with you unless they're real perceptive. But you feel like
you're just struggling — like each step is just really painful."
Not infrequently, symptoms of an "invisible" illness or of
side-effects from medication remain invisible to almost every-
one, including those who experience them. Metabolic diseases,
renal failure, and may all cause changes in
steroid treatments
response and mood. For example, Roger Ressmeyer, who has
diabetes, writes about insulin shock:
Severe shock is a frightening, profoundly mind-altering experi-

ence. The brain begins
to shut down, layer by layer, and unusual
command. First is a general sensation of
personality traits take
nervousness. Next, logic and reason are wiped out of conscious-
ness. Emotion is magnified. Happiness becomes glee, sadness
becomes misery, distrust becomes paranoia, anger may become
rage. ... In the middle of an argument with a close friend, I
suddenly lost control and landed a punch. I was shocked, horri-
fied. I consider myself a gentle and non- violent person, yet I had
clearly become "possessed" by a violent urge. Almost as soon as
it happened, I realized that what was "possessing" me was insu-
lin shock and my careening blood sugar. (1983:5)
Ressmeyer identified what was happening to him. Not every-

one does. Subsequently, behavior gets pinned to the individ-
ual's personality or situation. An older woman believed her
difficulty in concentrating was due to the tense office politics at
work; much later she discovered that she was having medica-
tion side-effects. Until such discovery, further symptoms and
medication side-effects can remain unnoted for lengthy periods
and, as in Ressmeyer' s story, can give rise to startling, unwel-
come images of self. When people discover the causes, they feel
enormous relief, if regaining control seems possible.
Not surprisingly, visible, unpredictable, and mortifying symp-
toms cause people to define a loss of control much earlier than
those with invisible, but known, symptoms. If embarrassing
symptoms are visible but illness is not, people usually curtail
their activities sharply. John Garston's uncontrollable coughing
riveted attention on him in public. He said, "But it is, you know,
it is embarrassing, no matter what —
spitting up and all of
that.. .But ... I guess possibly one of the reasons why I am
.
reclusive is that that's definitely one of them and, you know,

. . .
it has curtailed social activities, things like that, on my part."
Illness preempts valued pursuits and self-images along three

time dimensions: the daily round, the life structure, and the life
cycle. I will discuss strategies for handling the daily round in
Chapter 6 and only briefly outline three key points here. First,
the relative restrictiveness or flexibility of the daily round
shapes whether intrusive illness will preempt someone's usual
pursuits. The latitude to fit a daily schedule around illness and
regimen allows a person more control over pursuits and self-
presentations. A company sales representative who works out
of his home enjoys much greater flexibility than a surgical
nurse. Second, the time during the day when most
illness is
intrusive affects whether one can prevent it from preempting
valued pursuits and self-images. Several people managed to
work because they could control their symptoms until mid-
afternoon. Others struggled through an entire workday, then
found themselves overcome by fatigue by evening. When they
got home, they gave in to illness, after valiantly completing the
workday. A number of respondents echoed this woman who
said, "I collapse/'
Third, narrowed worlds resulted when the daily round con-
work, and self-care (Brooks and
sisted only of vital activities,
Matson 1987; Fagerhaugh 1975). These men and women could
not pursue relationships, hobbies, or recreation. They barely
maintained themselves, much less their households. A school
nurse with a metabolic condition gave up most activities except
her job. She asked, "Where did my evenings go? What did I get
done? Three hours pass and I didn't even know where it went.
The next day, I wondered what I had done the night before."
The daily round shapes, supports, and solidifies an individ-
ual's life structure. The life structure includes activities, daily
round, future plans, and the present experience of time. As
Levinson (1978) points out, the life structure shifts and changes
throughout the life cycle. Though illness prompts changes, in
turn, the life structure shapes the extent to which an intrusive
illness preempts pursuits. A slow-paced life with few external
demands helps to preserve and prolong earlier pursuits; they
simply take longer to realize. For some years, several young
adults had fluid, rather unstructured, lives. They did not hold
regular jobs; nor did they adhere to regular schedules. They
preferred pursuits like socializing with friends and forms of
self-exploration. They also lacked a finely tuned linear time
perspective. Having few time pressures, their lifestyles and
Intrusive Illness — 59
time perspectives muted the effect of intrusive symptoms. For
example, Sara Shaw had enrolled in college before she first
became ill, although she had seldom attended classes. She re-
called, "I just laid in bed for days, you know, never going to
school; I didn't even show up like for semesters on end ... I
would say that I probably went on my own pacing before that
[becoming ill] to some degree. ... I really didn't worry about
the fact that I didn't know whether I got up that day, you know,
whether I'd done something a week ago."
Later, when the momentum of these young people's lives
increased as they set career goals or had children, they discov-
ered how intrusive their symptoms had become. Having lim-
ited time and multiple demands upon it pinpoints attention on
functioning. In addition, busy younger people compared them-
selves and the structure of their lives to age peers rather than to
people with similar conditions. When they judged themselves
by the standards of people their own age, they almost always
fell short. Simultaneously, they sensed a sharpened contrast
between health and illness. And, like many Americans, these

young people saw health as the norm, something to take for
granted, especially when young.
In early midlife, most respondents' lives were structured
around jobs and families, and occasionally, school. Their con-
cerns centered on handling their responsibilities and on main-
taining their independence. Whether they could maintain a life
structure similar to the one that preceded illness often de-
pended upon the amount of social and economic support they
could muster. Part of that support translates into access to and
coverage for medical care. After his heart attack, Mike Reilly
had to borrow money from his brother, and his wife had to
become the breadwinner. He said, "And it's [her job] helped us
—
tremendously because because of their health program. I auto-
matically was covered by Sequoia Health Maintenance Plan and
with their coverage for care despite existing conditions. At that
time, prescriptions were just killing us."
The structure of elderly people's lives usually differed from
younger respondents; also, their expectations differed from
younger counterparts. 6 Frequently, their lives muted the visibil-
ity of intrusive symptoms. Also, they could gauge what they
felt they could accomplish without feeling pressured to do
more. One elderly woman commented, "I don't have to get up

early anymore, so I often don't. If I wake up stiff and tired, I
just stay in bed longer where it's warm and comfortable."

The life structure of elders may not complement that of youn-
ger spouses or adult children. Five years ago, at the age of
thirty-four, Vera Mueller married Ted McCartney, a retired me-
chanic and political activist. He had cared for his first wife,
Meg, until she died. Since then, his emphysema and cancer
had progressed. He said:
Everybody would say, "Why wouldn't you have Meg put in a

home?" would never come to mind to me to do something like
It
that. If you love somebody, that's it; it doesn't matter. My kids

draw similar parallels, and a lot of people do; they say, "Well,
why doesn't Vera go to the desert with you; that's where you can
breathe." can also see her point that after I'm gone, she's going
I
to have be able to work and unless she gets her career going
to
pretty soon, she's not going to be able to do that very well. And
so what's best for her career is not best for my breathing.
In contrast, Vera had already told me that Ted was still angry
about her not going to the desert and more generally, about
how she responded to his illness. She said:
I was there. I think

think that expectation [of receiving total care]
in hismind that he expected me to do him the same way [as he
had done for Meg], but it's clearly not the same situation. For one
thing, his health is better when he has to take care of himself. In
other words, he's the kind that he would let me do everything
for him; he would become totally an invalid and love every min-
ute of it . . . where he gets upset with me is that I say, "Look you
aren't going to be around to take care of me when I'm sixty-five
years old . . . and I have to see to it that I can take care of
myself." . . . And he gets very mad at me.
when isolated aged parents must rely on

Similar tensions arise
who have multiple commitments.
their adult children
Aged men and women often assumed that they would lead
narrowed, even restricted, lives. Moreover, they believed that
Intrusive Illness — 61
reasonable people should expect to feel worse as they age. Here
again, these elders defined the "appropriateness" of illness in
relation to the life cycle. Just beforeasked a ninety-one-year-
I
old woman about her chronic illness, she had recited a litany of
symptoms. She giggled merrily and replied, "Heavens, dear,
I'm not ill; I'm just old."
The meanings and priorities preempted by illness also shape
an individual's experience and stance toward it. Intrusive symp-
toms remain less visible when someone does not need to fulfill
multiple obligations. Goals, priorities, relationships, and time-
frames affect the meaning people give to intrusive illness.
ill
When a young single woman confronted her potentially life-

threatening illness with equanimity, she had no career or spe-
cial goals, limited family contact, and few close friends. She
compared herself to a middle-aged woman who also faced a
life-threatening illness but who had and goals.
a family, career,
Noting this woman's extreme fear of death, the young woman
matter-of-factly remarked, "No wonder she is so afraid; she has
more to lose than I do." For her, illness did not preempt a
valued life at that time.
Similarly, people who have no valued pursuits and few obli-
gations may find intrusive illness less frustrating to cope with
than others do. People whose "main" pursuits consisted essen-
tially of side-involvements also had less difficulty dropping
them. For example, before they became ill, several students had
dropped out of college because of family obligations; they had
few regrets about doing this. Later, when their symptoms wor-
sened, they once again left school with little difficulty. As a
young woman, Vera Mueller had subordinated her studies to
her "hippie" lifestyle. She commented, "Dropping out didn't
bother me until I became serious and my education came first."
In short, the relative significance of intrusive illness turns, in
part, on the structure of ill people's lives.
Both financial and family status influence someone's stance
toward illness and shape his or her meanings and priorities con-
cerning it. Financial pressures usually force an ill person to
struggle as long as possible to remain working and independent.
Financial protection —
through spouses, solid pensions, or trust
—
funds provides a buffer from some of the worst consequences
"

of chronic illness. This protection allows options such as choos-
ing early retirement, moving to a milder climate, or purchasing a
car with automatic features. Patricia Kennedy, whose husband
was an executive, remarked, "Not everyone can afford to spend
thousands on a bathroom or put in a new shower which has a
seat in it, you know, or buy a new exercise bike and a whole array
of weights. And certainly having money has — made a differ-

ence, being able to buy a car that is easier for me to drive made a
difference. It would be very difficult to be poor/'
Similarly, families provide a buffer for some men and women,
which allows them to relinquish obligations. Those who be-
lieved that they could rely on family expressed much less anxiety
about giving up jobs and other obligations than those without
families or who did not wish to rely on them. A single woman
felt that she must soon be employable. She stated: "I have to get
through [school]. I can't borrow more money or live with Mom

forever. Next year I have to be working.
The predicted duration of intrusive illness figures in ill
people's stance toward Commonly, they develop time-

it.
—
frames short-term frames for each day and long-term frames
for the years ahead. Short-term frames allow them to get
through the day.
Many people push themselves through their usual schedule
and then attend to their illnesses later. Hence, a lecturer spent
his lunch hour on a cot in his office after his morning class. A
student forced herself to finish her daily assignments and to
organize the family's meals before resting. A businessman
handled all his important work in the morning so he could leave
the office early in the day. An eligibility worker used flextime so
that she could spend afternoons and evenings in bed.
Shorter timeframes allow ill people to maintain their longer
timeframes, i.e., their predictions about how much longer they
will need to manage intrusive symptoms and struggle to main-
tain their lives. As Star (1985) observes, they segment uncer-
tainty. Thus, they plan or hope for a definite ending for their
current strategy.Hopes of realizing distant plans and dreams
provide a greater incentive for struggling to manage arduous
daily timeframes than the belief that the present is endless.
Hence, the following comments reflect the end in sight:
'til my daughter gets through high school

'til John finishes graduate school and takes over
until next year, then I'm going to go into early retirement
Most of these people believed that theywould have better

lives after this point in their timeframe. Sometimes they im-
plied that something magical would happen at that point in
time. Not only would life become easier, but also their current
problems with illness would be ameliorated.
Relationships with others shift and change as ill people's
time structure and involvements change. Young children and
spouses are closest to and most affected by these changes.
Young children may share household work and monitor a
parent for symptoms. A spouse's handling of the changes
shapes the character of their relationship. Older women, for
example, sometimes acted as if their marriage remained the
same as it had been before illness, when, in fact, it had
changed. Usually an older wife of a sick husband not only
gained power in the household, but also over her husband's
care, though she may delicately avoid any blatant use of it
(Calkins 1970; Lear 1980).
Couples draw apart if illness builds upon their differences.
Tina Reidel spent much of her free time with friends, healers,
and fellow spiritual seekers. The man with whom she lived
worked on his boat or watched sports. She said:
I spend time with the boyfriend, but we don't seem to get along
that well —
we have been completely celibate for a couple of years
and it's sort of like two cranky people living together, with health
problems. And I don't like sports and he likes football. And . . .
so I just feel like we sleep in the same bed and I don't even have
any contact with him there because my legs hurt so much. It's
like he sleeps on his side and he starts snoring, and I say, "Jim, I
can't sleep." "What?" "You're snoring." "Well, I got asthma."
And it's going on like that.
Intrusive illness often removes the spontaniety from sex. As

one woman said, "It takes the romance out of it to have to plan
it." Another woman said that her involuntary cries of pain
when she moved caused her husband to be reluctant to have
sex. A young man said that his new love left him because of his
increasing impotence (see also, Kotarba 1983).
Closeness turns on maintaining contact. If contact becomes
sporadic, friends and families usually drift apart. Ill people sim-
ply may not have the energy to make phone calls, much less to
provide companionship or assistance. For example, a middle-
aged single woman felt that her once close relationship with her
sister had suffered. Earlier, she had done most of the visiting,
since she had a car and her sister had children. When she could
not drive that distance, nor afford the phone calls, she rarely
heard from her sister.
In other instances, relationships falter because people cannot
tolerate viewing the ill person's disability or distress. For years,
a woman with multiple sclerosis and her brother had shared
family outings and holidays. Those shared events dwindled.
Her brother told her, "It hurts me so much to see you like this."
Certain relationships thrive on pulling together to combat
illness. Some partners find a niche for themselves through the
other's illness (Speedling 1982). And they may also enjoy new-
found authority in the household. They like feeling useful and
involving themselves in care. Lara Cobert described her former
boyfriend's sense of loss when she improved:
In a screaming, yelling battle, he said, "You had it all once. You

got sick andcould take care of you. But you went and got well
I
and took it away." It was very interesting to me listening to him

say that. He liked it! I always thought of him as so powerful. I
was scared to death of him, and I'm not usually scared of people.
He didn't apparently have much sense of personal power. The
only time he was totally comfortable was when I was powerless
in one way. ... I thought it was disgusting.
More commonly, ill people claim more control over resources

than others wish them to have. Sometimes ill people assume
the right to delegate tasks and to extract extra attention from
intimates. Many however, that their claims become nego-
find,
tiable and others place tacit, but firm, limits on the amount and
kind of attention they will give.
Intrusive Illness § 65
Keeping Illness Contained
What happens as an intrusive illness continues? How do people

handle it? Three stances toward illness flow from their degree of
acceptance of it and the meanings they attach to it: they either
embrace, incorporate, or contain it. Here I focus on keeping
illness contained, but first I briefly describe embracing and incor-
porating it. Embracing illness goes beyond reconciling self to it
or accepting it. People welcome it. They take their images of self
from it. Illness lends meaning to life and imposes a daily routine.
Embracing illness fosters accepting a life founded on it.
Other pursuits and events become subjugated to living with
illness. Entire households become restructured. Everyone's
emotions revolve on the vissicitudes of illness and on the ill
person's moods. By embracing his heart disease, a man con-
trolled his family by constantly reminding them of his impend-
ing death. In addition, a foreboding feeling permeated this
home.
Although entirely atypical among my respondents, several
individuals rather happily adapted to intrusive illness and im-
pairment. A middle-aged man had long been unemployed due
to his disabilities. He said candidly, "I'm quite content with
things the way they are. I'd hate getting up each day at 6:00 and
go through all the bustle and rush of getting through the
day. .Not. . for me, thanks. As long as Connie [his wife who
had several chronic illnesses and was blind] doesn't get worse,
things are just fine."
Only two other individuals seemed satisfied about embrac-
ing alife founded on illness. More commonly, people allude to
embracing illness and slip into this stance gradually. For them,
handling illness provides a raison d'etre. While they may
disclaim embracing illness, their actions belie their words. Oc-
casionally, a relative suggested that the ill person embraced
illness. "You know, she's using it for all the mileage she can
get." "He's enjoying the attention." The disparities that rela-
tives noted between the person's expected and actual function-
ing served as a measure of embracing illness.
"

Incorporating illness means recognizing it, taking it into ac-
count, and living with, rather than for, it. When people incorpo-
rate illness, they also are attached to it. However, they build
their selves upon illness rather than limit their self-concepts to
it.Five years after her lengthy seige with lupus erythematosus,
—
Sara Shaw said, "It's incorporated it's part of me, but it's a
much friendlier part now. We are not at war.
Thus, not only becomes a way of identifying self, it
illness
becomes a part of self. Lois Jaffe's remarks show how deeply
illness can etch self-definition: "Being leukemic is as much a
part of my identity as being a woman or being Jewish. It is a
part of myself I cannot slough off, no matter how hard I might
,,
try (1977:209).
Manypeople want to keep their intrusive illness hidden at —
least in public, if not also from self; they work at keeping illness
contained. They try not to let it rule their lives. They wish to
continue at least a semblance of their former lives. Above all,
they refuse to rely on their illness as a ready-made excuse for
shirking obligations. They may and rejection due
also fear loss
to stigma. Hence, these people keep illness contained
try to
through two interrelated strategies: packaging and passing.
Packaging means presenting the self so that illness remains
contained, separate from the public, and usually, the private
self. Passing means functioning without detection of either the
illness or its effects.

By packaging person treats illness as if it is con-
illness, a
trolled, delimited, and confined to specific realms, such as pri-
vate life. Packaging means "guarantees'' that the illness will not
seep out of its containers unexpectedly. Packaging also means
that ill people present the self as if it were in control of their
illness package. They keep illness tightly wrapped. A concep-
tion of illness as external to the self frequently underlies these
views. Yet these views also assume that illness can intrude
upon the self or perhaps, if improperly contained, take over the
self.
When attempting to package illness, people treat outbreaks

of their illness as unrelated episodes and hospitalizations as
independent units of time. Past events remain distant from
present self and unconnected with current health. Each epi-
Intrusive Illness « 67
sode, each hospitalization, becomes a separate package, a fin-
ished, completed product, not a continuing illness. Ill people
may dredge up these past packages and use them as interesting
stories, but close them again in order that the contents do not
rip open, leak out, or spill into their lives.
Conceptual packaging shapes meanings of illness. How
people think about and categorize their illness reflects how they
treat it. They may not define their physical status as illness. If
anything, it is a "condition." To them, adopting the term "ill-
ness" means being sick, allowing closer surveillance by medical
professionals and, moreover, sometimes adopting the patient
role. Many people see themselves as relatively healthy, except
perhaps for delimited symptoms (Bury 1988). For these people,
"illness" connotes serious, incapacitating, current symptoms.
Hence, a woman felt appalled when a friend referred her to me
for my study of chronic illness, although she had had cancer
and still suffered from disabling rheumatoid arthritis. For her,
cancer, not arthritis, merited the status of a bona fide "illness."
And, she avowed that she was cured. Compared to cancer, she
saw arthritis as inconsequential. She stated that its effects were
"negligible," despite several delicate surgeries, risky treat-
ments, and, formerly, an inability to walk.
By not defining illness, people try to separate it from their
lives and to detach it from their self-concepts. Seven years ago,
when I asked Vera Mueller about her illness, she responded,
"Well, in the first place, I don't see it as an illness. At the very
best, it is a condition — or at the very most, I should say, a
condition. Separate? Oh, I wish it were. It used to be separate
from my life; it used to be something that only when other
people forced me to, I'd pay attention to, or only when I
pushed myself too far, I'd pay attention to."
Shortly thereafter, Vera stated emphatically, "I don't want to be
a sick person." She avoided adopting that identity by conceptu-
ally ruling out illness. Similarly, the elderly woman who saw her-
self as old, not ill, then said that for a woman her age, she was
exceptionally "well." Taken-for-granted conceptions of aging as
deterioration allow for similar conceptual camouflaging. "Ag-
ing" reduces incentive for remaining active and provides a ready-
made conceptual package to account for growing infirmity. At
—

fifty-eight,Marty Gordon observed, "It's hard to tell what is just
aging and what might be connected to the illness/'
Family, friends, and professionals sometimes provide the con-
ceptual camouflaging. For years, an elderly woman accepted
her doctor's category of "a minor heart murmur." In contrast,
another elderly woman with the same type of murmur saw
herself as having a disabling heart condition. Paradoxically per-
haps, those who incorporate illness occasionally no longer de-
fine themselves as "ill" or their conditions as "illness." After
having no serious episodes for five years, Sara Shaw remarked,
"I tend to think of it [lupus erythematosus] as part of my life,
not an illness."
As Vera Mueller's comments above suggest, terms like "condi-
tion" or "syndrome" also provide conceptual packages. Ambigu-
ous terms result in varied conceptual packages. For fourteen
years —
until she had a major episode of multiple sclerosis
Harriet Binetti accepted her neurologist's label that she had "a
minor neurological condition." When people asked, "Why are
you limping?" or when she wondered, "Why am I so tired?," she
explained and discounted her symptoms by saying, "I have a
minor neurological condition. " How ill people interpret and con-
ceptualize their medical status may either minimize or magnify
it.
Self-presentation, which shades into passing, is another ma-

jor part of packaging (cf. Goffman 1959; Morgan 1982). Younger
people, particularly, talked about their appearances. Patricia
Kennedy said, "I never go anywhere if I don't feel good. If I
don't look good, I just won't go." Vera Mueller exclaimed,
"Look at me — I don't look sick; I don't act sick; I often don't feel
sick. Whoever would suspect don't want people to know."
it? I
Concern with appearance turned on keeping illness contained,

controlling it, and passing.
Passing entails concealing illness, maintaining a conven-
tional self-presentation, and performing like unimpaired peers
(Strauss and Glaser 1975). People attempt to pass for two rea-
sons. First, illness could count against them, or they believe it
would (MacDonald 1988; Scambler and Hopkins 1988; Schnei-
der and Conrad 1980; 1983). For example, a business executive
thought that knowledge of his illness would put him at a
Intrusive Illness m 69
disadvantage in contract negotiations. So he told no one and
concealed evidence of it. Second, illness could bring people
special privileges because of pity, or possibly, concern.
Passing depends on concealing infirmity. If others know the
diagnosis, ill people may acknowledge it but hide its implica-
tions. Crises vitiate passing. Visible symptoms such as slurred
speech, an unsteady gait, or shortness of breath undermine it
(Pinder 1988). An abstract discussion of a person's diagnosis is
one thing; exposing infirmity is quite another. Lin Bell's friends
knew that she had a heart condition. However, they did not
know what would overtax her. She said:
You learn how to hide infirmities. And mine doesn't show. . . .
I'm having company this weekend . .and they know, you

.
know, that I can't do, but I don't want them doing everything for
me, so I bought three gallons of wine. ... So I bring it to the
bottom of the stairs; I stand there for two or three minutes, then I
lift each bag up and I lift them up about four stairs and then I
follow them up. . .It takes me fifteen or twenty minutes to get

.
groceries up [to her second floor apartment], but I don't want

anybody to know. I mean, if they're out there watching me,
they're going to know.
Passing Obviously, passing depends on competent

is risky.
performances at crucial times and places. Successful passing

often requires an alert assistant. A woman's mother monitored
her behavior and symptoms at social events. Then, they could
leave before the point that her incoordination and slurred
speech belied her attempts to pass. A wife covered phone calls
for her husband when he experienced confusion. A small boy
staked out public places to find locations where his mother
could sit or lean. A teenager waited in grocery lines for his
mother since she risked losing her balance while standing still.
Passing and packaging permit people to choose how to deal
with their illnesses. Paradoxically, however, the very reasons
for —
keeping illness contained to pursue a career, to keep a job,
to —
develop a relationship can foster the condtions in which
intrusiveness of illness escalates. For example, as Ressmeyer
(1983) found, irregular hours, lack of sleep, and fast foods
70 — i EXPERIENCING CHRONIC ILLNESS
caused havoc with his diabetes, even though he passed for

months. In short, risky strategies for keeping illness contained
can result in magnifying it and having it flood identity.
Beyond being strategies to maintain self-presentation, pass-
ing and packaging also are strategies to preserve self. Contain-
ing illness in tight packages and managing to pass alleviates the
necessity of facing illness directly. If regimen and symptom
control work, someone can deal with illness in small doses.
That is, the person reveals illness in controlled gradients to self
as well as to others. Thus, thudding realizations about what life
might become are avoided. Simultaneously, the person affirms
that illness is only what he or she experiences now.
If people can control symptoms and create manageable lives,
or if illness remains relatively quiescent, passing and packaging

—
can become taken-for-granted strategies so much so that
these people may believe that their illness is over. But when
regimens fail, or the disease flares again, these individuals
plummet into depths of self-blame. They believe that they have
not done enough. In short, effective packaging and passing
strategies encourage redefining illness. And that redefinition
sets the stage for dramatic self-blame if the strategies later fail.
Developing a Dialectical Self
The between the sick or physical

dialectical self is the contrast
self and the monitoring Keeping illness contained by im-
self.
peding progression of illness, rather than merely hiding it,

leads to developing a monitoring self. Developing a dialectical
self means gaining a heightened awareness of one's body.
People who do so believe that they perceive nuances of physi-
cal changes. By his second transplant, for example, Mark Rei-
nertsen felt that he had learned to perceive the first signs of
organ rejection.
When these people no longer view themselves as "sick," they
still monitor their physical selves to save themselves from fur-
ther illness. Sara Shaw explained that she spent months of

"learning time" to be able to discover what her body "needed"
and how to handle those needs. She commented, "I got to
know it [her ill body]; I got to understand it, and it was just me
and mixed connective tissue disease [her diagnosis changed],

you know, and I got to respect it and I got to know to have a —
real good feeling for time elements and for what my body was
doing, how my body was feeling." When I asked her what she
meant by "time elements," she replied:
There's times during the month, during the course of a month,

when I'm much more susceptible, and I can feel it. I can wake up
in the morning and I can feel it. ... So I really learned what I
was capable of and when I had to stop, when I had to slow
—
down. And I learned to like give and take with that. And I
think that's all programmed in my mind now, and I don't even
have to think about it now, you know; I'll know. I'll know when,
no matter what's going on, I've gotta go sit down and take it . . .
easy . . . that's a requirement of that day. And so consequently, I
really don't get sick.
In the dialectical self, the monitoring self externalizes the inter-

nal messages from the physical self and makes them concrete. It
is asdialogue and negotiation with ultimate validation of the

if
physical self take place. For example, Mark Reinertsen engaged

in "person to kidney" talks to encourage the new kidney to
remain with him (see also McGuire and Kantor 1987). A compe-
tent monitoring self attends to messages from the physical self,
and over time, as Sara Shaw's comment suggests, monitoring
becomes taken for granted.
In many ways, the dialectical self is analogous to the dialogue
that Mead (1934)
describes between the "I" and the "me." The
"me" monitors and attends to the "I" that creates, experiences,
and feels. The monitoring "me" defines the "I's" behaviors,
feelings, impulses, and sensations. It evaluates them and plans
action to meet defined needs. Here, an ill person takes his or
her physical self as an object, appraises it, and compares it with
past physical selves, with perceived health statuses of others,
with ideals of physical or mental well-being, with signals of
potential crises, and so forth (cf. Gadow 1982).
The dialectical self is one of
people's multiple selves that
ill
emerges in the face of uncertainty. Whether ill people give the

dialectical self validity significantly affects their actions. For
someone like Sara Shaw, the provided guidelines
dialectical self
for organizing time, for taking jobs, and for developing relation-
ships with others. With jobs, she believed that she had to guard
herself from the stress of too many demands. With friends, she
felt she had to place her needs first. With physicians, she re-
sisted their control since she trusted her knowledge about her
condition more than theirs.
Practitioners may encourage a monitoring self when it seems
to "work," yet condemn it when unsuccessful, or when moni-
toring tactics conflict with their advice (cf. Kleinman 1988). The
development of the dialectical self illuminates the active stance
that some people take toward their illnesses and their lives. In
short, the dialectical self helps people to keep illness in the
background of their lives.
4
Immersion in Illness
The MS [multiple sclerosis],your balance and it affects your

it affects
bladder and —and I My stomach is bad. And
do have a catheter. . . .
—
and unfortunately, those are areas that really hurt you when you're in
a wheelchair.
So there's always a bladder infection. . . . When I came out [from
the nursing home], it seems like that's all I deal with — bladder infec-
tions. . . . Sol just cleared a bladder infection. It was stressful and it's
just been a year of that bladder infection and I probably have another
one and this has just been a week and a half. So I can always tell with
—
my back pain and the way I sleep and and with every bladder infec-
tion, the medicines —
they kill the good bacteria, too. So you get a yeast
infection and it's like you just live around the clock [with illness and
care] and it's — —
and that's if all I have to deal with, that's one thing,
but I have all the stress of my — my family. And that's taken a real toll.
And then my bowels don't work. This bladder medicine gives you
diarrhea.
Medications. Regimens. Setbacks. Suffering. At forty-five,

Harriet Binetti constantly attended to acute conditions that
disrupted and even threatened her life. Relentless pain and
mounting troubles stretched minutes into hours. During the
past decade, Harriet's health had rapidly deteriorated. Ini-
tially, multiple sclerosis had left her with minor disabilities and
some inconvenience. By the time we first met, Harriet could

only move her head.
Harriet Binetti frequently became immersed in unpredict-
able, devastating flare-ups or acute conditions. She needed con-
tradictory medications for different complications and had drug
allergies besides. Medi-Cal insurance did not readily cover the
73
substitute medications that she could tolerate. Trying to balance
her symptoms, medications, and treatments without making
her sicker and poorer resembled putting together an intricate
—
and engrossing puzzle a puzzle that devoured time and de-
manded attention.
Nonetheless, Harriet Binetti tried to have a life beyond ill-
ness. When she could, she attended community events in her
electric wheelchair. Low-income housing, Medi-Cal insurance,
and attendant care allowed her to live autonomously on a lim-
ited disability benefit.
Before she obtained low-income housing and attendant care,
Harriethad spent three long years in nursing homes with virtu-
no control over her life. As a result, illness and death fright-
ally
ened her less than the prospect of going to another nursing
home. She took refuge in the pleasant apartment that she
shared with Sally, a young friend who served as her nursing
attendant.
Harriet Binetti' s congenial bond with Sally contrasted sharply
with the tension and torment in her relationships with her
adult children. These relationships, too, shaded her experience
of illness. Her daughter's marriage to a recovering drug addict
disappointed her, as did her son's perpetual unemployment
and sporadic tangles with the police. She and her daughter,
Susan, had had a row when Harriet discovered that Susan had
smoked marijuana throughout her recent pregnancy. Though
Harriet apologized for not handling her feelings well, she had
not heard from Susan since. Harriet's longstanding tensions
with her son, Robert, erupted shortly thereafter. Although Har-
riet had few financial and social resources with which to put a
life together, Robert continued to ask her for financial help and
for emotional support. She told me that she said to him: " T
didn't ask to be put into this chair [wheelchair] and it's enough
for me to take care of myself, and I think I do fairly well for
being disabled. And I can't understand why you, as a normal
human being can't do half as well as I can. Not you, Robert. I
"
can't— I can't.'
Harriet believed that her ex-husband and children blamed
Robert's troubles, including having the AIDS virus, on her.
When I asked, "You?" She said, "Yeah, because I had to get
Immersion in Illness 75
married [to Robert's father] and because Ihad to get married,

his father wasn't very good to Robert . . and well, Robert
.
didn't find that out until this year. . . . And you know, talk
——
about nailing Jesus Christ to the cross I He didn't suffer half
as much as I got nailed for. I mean ... for getting pregnant
before I got married."
The ripples of the past absorbed Harriet Binetti's thoughts,
and the ravages of multiple sclerosis flooded her days. Yet she
did not passively succumb to illness. Despite her medical, fam-
ily, and financial problems, Harriet tried to have a good life.
Both Harriet and Sally created numerous innovations to man-

age Harriet's care more easily and to grant her more autonomy.
They improvised a way for her to use her speaker phone with-
out having help. Harriet devised a way to drink water indepen-
dently by attaching a jug with tubes to her wheelchair. They
both kept abreast of legal changes that might offer Harriet in-
creased services. And they both showed amazing resourceful-
ness in finding and using community agencies and programs.
After the three years in nursing homes, Harriet relished
her independence and valued her friendship with Sally. Time
took on new meaning. Certainly, illness, pain, and perplexing
troubles sometimes engulfed her in unending time. And the
routines of care shaped her days. Such immersion can separate
anyone from the rhythms of ordinary adult life. Subsequently,
the temporal order of immersion in illness leads one into an
extraordinary reality with its own structure and rules.
However, like most ill people, Harriet Binetti tried to limit
being immersed in illness. When her physical condition stabi-
lized, Harriet's and Sally's interests in cooking, outings, and
discussing current events broke the illness routines. Harriet's
interests kept her grounded in conventional realities and ordi-
nary pursuits. Like others, Harriet resisted becoming im-
mersed in illness, although her life was founded upon it.
When people have choices and resources, they can move back
and forth between immersion in illness and having a life
founded upon it.
Time
In either case, illness refocuses one's time perspective.
seems revised and reshaped. In turn, changes in viewing and
experiencing time may lead to changes in self-concept.
A Life Founded upon Illness
Many people, like Harriet Binetti, try to carry on ordinary but

limited pursuits although their lives have become founded
upon They
illness. try to keep illness in the background, the
backdrop on which daily scenes are played (Lewis 1985; Pitzele
1985; Register 1987). They still take the external world as their
point of reference, despite the encroachments illness has made
upon them. Although illness orders life, it does not entirely
define or people attend to other things as well for months
fill it;
or, intermittently, for years. They raise children; they keep

house; they maintain self-care. They may even work occasion-
ally when they can, or serve as volunteers.
When life becomes founded on illness, illness is not simply
intrusive. No longer can people add illness to the structure of
their lives; instead, they must reconstruct their lives upon ill-
ness. Hence, they cannot simply add regimens, rest periods,
timeouts, and so forth to work, school, leisure, and family ac-
tivities. The requirements of illness and health come first and
now define their pursuits.

A life founded upon illness lies a hair above immersion in it.
Health remains precarious; crises, complications, and setbacks

often force people into immersion. Afterwards, they might
again have a restricted life founded on illness. At that point,
illness again partially recedes into the background of daily life.
As debilitating episodes increase, having a life founded upon
illness may be the most that a person can hope for.
Most of these people don't work. They can't. Ann Rorty's
1
unsuccessful back surgery, bowel incontinence, and heart dis-

ease forced her to quit her job. She reiterated what her surgeon
had said: "He said that definitely, I can't go back and do the job I
was doing. No lifting. For three years straight, I was
. . . . . .
lifting maybe eleven buckets of grease a night. ... I was carry-

ing it out to the back, two buckets to dump and I finally weighed
them, when I was getting ready to have this surgery this last
time, just before my last day at work, I weighed the buckets and
they were nineteen pounds and that's quite a bit to be lifting
from the floor up, you know, that many times a night."
Immersion in Illness hi 77
When a "physical" condition affects mental functioning, or

mental strain reduces usual productivity, ill people are forced to
leave work. Though they may handle household tasks quite
well, they feel confused, unable to concentrate, and immobi-
lized by distractions, which interfere with their work. A former
attorney stated:
I don't have problems concentrating — I have problems shifting

my concentration from one area to another. So if I have to think
about the source of a legal process as it was in 1870, 1887 or

something ... I can use my mind like a search light bring my —
mind to bear on some of these, you know, fundamental con-
cepts, but if I have to remember to put the staple in the letter and
—
then turn the typewriter off and punch the you know, and do a
number of different, simple little things, I can't do it. I can't do it.
A few people still manage to do limited work when they

could control the structuring, scheduling, pacing, and content
of their work. Retired executives sometimes did intermittent
consulting for their businesses. Harry Bauer's heart condition
caused his early retirement from his powerful union office ten
years ago, but the union "kind of created a special thing to let
me work as much as I wanted to work when I first retired."
For those without an adequate income, a life founded upon
illness means work —
hard work. Limited money, reduced ac-
cess to services, insurance problems, and enormous hurdles to
obtain a disability benefit all mean work. Lifestyles change dras-
tically with less income, more bills, and new needs. If no advo-
cates help, ill people must do the work themselves despite
being physically depleted. When she was forty-seven, Nancy
Swenson had constant disturbing symptoms. Also, she was in
the midst of completing massive amounts of eligibility docu-
mentation for a disability benefit for herself and for services for
her mother. She described how her condition intervened with
preparing her applications:
When have bad nights with that [sleep apnea], I'm just so
I
physically exhausted that it seems like there's just not

. . .
enough time because I can't get going. Or on the other hand,

when I'm like that, I get behind and then when
I feel good, I
have to catch up on back stuff and caught up and get a

try to get
little ahead so that if I'm down again I won't have to feel the
pressures of, "Oh, God, I'm just sitting here and I have all this to
do."
I asked, "What sorts of things play on your mind that you need
to do?" She said:
Paperwork.
I spent two years fighting for my Social Security and did all of
my paperwork, with Ed's [disability rights advocate] help. Social
Services, they give me three social workers. One for food stamps,
one for Medi-Cal, and one for General Assistance. All three of
— — —
them not them the computers whatever, have messed up.
So the paperwork is incredible that they send me to keep up. Well,
then I have my mother's [who has Alzheimer's] paperwork along
with my own paperwork to try to do, which is ... an absolute
impossibility to do in my mom's waking hours or my mom's time
in this house.
The work extends to other people and exhausts resources.

Patricia Kennedy's husband interceded with her employer
about her insurance coverage when she had to stop working.
Not only was Bonnie Presley's health depleted, but also, she
went through an inheritance for doctor bills and living ex-
penses when she could not work and did not have insurance.
She even had to sign her car over to her landlord to cover three
months of late rent. Afterwards, she only had the meager sup-
port of General Assistance. Bargaining to cover expenses was
work. Getting information about getting help was work. Travel-
ing fifty miles to attend workshops to assist her in applying for
a disability benefit proved too exhausting.
Nevertheless, a life founded on illness can have rewards.
Nancy Swenson said, "I can't do the things that I used to be
able to do, but see if you can't, you don't dwell on that, you go
on and you find the things that you can enjoy. ... I think [ill
people] do fine if you socialize. [Then] you don't dwell upon
your illness."
—
Immersion in Illness « 79
Experiencing Immersion
As people become immersed in illness, the structure of their

lives changes and immediate concerns inundate them. Priori-
ties change.
Recasting Life
Illness keeps shooting into the foreground. The momentum

and impact of illness recast people's lives into new forms. Sara
Shaw said, "It [illness] was my
wasn't part of my life; it
life. It
was my life." Try as they will, these people cannot bring them-
selves out of illness; it overtakes them. Mark Reinertsen re-
marked, "The last six months or so, it's been one thing after
another. My hemocrit's down, [I'm] vomiting blood. Last week
I had real trouble breathing — my weight went down, but my
fluid level went up. I've been feeling emotionally over-
. . .
loaded with my [disrupted] plans, my stuff [continuous compli-

cations], helping my friends with their stuff [problems]."
After years of valiantly dealing with his condition, Mark
Reinertsen offered these comments as observed facts. But for
others, a pervading sense of victimization accompanies immer-
sion in illness. Illness and disability stay in the foreground
ever present and ever vexing. For such people, illness and
disability affront self. Beliefs that life would be perpetually
positive, progressive, and productive promise control over
one's self, one's life, and one's fate. Yet these people had
become ill. To them, their illness means more than an insult to
the body; it represents an unwarranted, illegitimate attack
upon the self. 2 Their despair over not recovering floods their
self-concepts and subsequently, sinks them deeper into immer-
sion in illness. For them, illness has recast their self-concepts
as well as their bodies and lives.
With these feelings, continuing immersion raises questions
about whether to live at all. For example, Ron Rosato's rapid
downhill course of multiple sclerosis led him to a suicide attempt:
When I first it was almost instantly
got this problem, I got into —
drugs because wanted out of this life. I saw this life [with
I
multiple sclerosis] and I couldn't handle it, you know. And I did
drugs and I did everything I could to end it. And it just wouldn't
happen. About six years ago, I was doing freebase and I was
arced [drugged out of his mind]. And then, God, I thought that
was it. I had to be strapped in bed. And I just said, "Lord, please
let me go tonight/' And I fell asleep and I woke up in the morn-
ing; man was I pissed off. Oh, was I pissed off.
Facing Dependency
Immersion in illness means experiencing the vulnerability of

one's body: facing dependency. Certainly physical dependency,
ifnot also social and economic dependency, can result from
illness. However, many ill people just glance at their depen-
dency and turn away. They cannot accept it, even when foisted
upon them. For them, dependency remains a greater specter
than death.
At this point, ill people may reject anything that they view as
a symbol of failing health or as a testimony to dependency.
Goldie Johnson's inexplicably rapid progression of emphysema
and heart disease made walking impossible. She said, "I turned
down the wheelchair twice. Before, I'd go 'ugh'. That's the . . .
—
hardest thing about being a shut-in you've been on the go all
your life, then [to] be a shut-in. ... I had a total heart attack
and emphysema and that put me in the wheelchair."
Married people often assume that their spouses will serve as
theirarms and legs to do many tasks that are now difficult or
impossible. However, even in long-term happy marriages, de-
pendency alters and strains relations. Robert F. Murphy's be-
nign spinal cord tumor caused paralysis of his arms and legs.
He states:
During the course of a day, I usually ask Yolanda [his wife] for
dozens of small services, over and above the main care she gives
me. Since I know she is overburdened, I generally hesitate to ask
for things and feel slightly guilty about bothering her —a guilt
that becomes added to that caused by my damaged body. As a
result, I am especially sensitive to the tone of her response. Do I
detect a note of impatience? Is she annoyed? Is she overtired?

Should I have asked her? Does that slight inflection say, "What
the hell does he want from me now?" (1987:213-214)
The prospect dependency poses horrendous problems for

of
single people. When
Bonnie Presley was sick, broke, and un-
able to function, she saw only two alternatives go on disabil- —
ity or get married. She recounted telling the eligibility worker:
I said, "I don't want to do this [marry Ken]." I said, "I need to be
independent; I —
need to be able I've been forced into marriages
all my life and I feel like I'm going to be forced into something
again. Go live with a man."
[To me]: I don't mind crawling up there in that bed by myself
rightnow. I hurt, you know and I don't feel sexy just the —
thought of kissing me [shakes head in disinterest]. . . . [with fear
and fervor] I hope I don't have to marry Ken just to survive. I
don't want to be forced into a relationship just to keep from

starving.
And what happens when people have no one? The specter

of dependency means silence or institutionalization. Subse-
quently, these people face dependency and handle it by elimi-
nating chunks of their lives, even at risk to their health (see
Chapter 6). Others face dependency by accepting poor care
and great loneliness rather than asking for help, for comfort,
for love.
Pulling In
Immersion in illness shrinks social worlds. It forces people to

pull into their inner circle while pulling away from others. They
must try to protect themselves and to keep some control over
their lives. They have little strength for anything beyond ill-
ness. Pulling in begins with crisis or intrusive illness and gains

momentum with immersion. Typically, pulling in is a taken-for-
granted adaptation to serious illness. Pulling in permits ill
people and their caregivers to tighten the boundaries of their
reorder their priorities, and to struggle with the exigen-
lives, to
cies of illness.
Usually, people tighten their essential relationships and
loosen problematic bonds and casual ties. For example, a
young woman temporarily pulled away from her mother and
siblings with whom she had tense relationships. Simulta-
neously, she reaffirmed the bonds with her husband and chil-
dren. She felt that she could not afford the time, physical
energy, and psychic space to handle anything more. Hence,
she took a timeout from her mother and siblings while strug-
gling with illness.
Certainly pulling in allows for ranking relationships and mak-
ing priorities, which can occur by default. In retrospect, people
sometimes discover that pulling in lets them jettison difficult
people from their lives.
Ordinary life cycle transitions may coincide with and inten-
sify pulling in. Like everyone, ill people have parents who die,
children with troubles, spouses with midlife crises, and part-
ners who retire. Furthermore, by pulling in for illness, people
have fewer social resources to draw upon during their own
predictable life cycle transitions. Although necessary, pulling in
to handle serious illness sets an empty stage for future social
isolation.
Slipping into Illness Routines
Many people slip into consuming illness routines by: 1) expe-

riencing devastating symptoms that preclude other involve-
ments, 2) requiring maintenance care, 3) ordering the day
around illness and regimen, and 4) ceasing to look beyond
illness and care to view and to form their lives. Life echoes that
within institutions; the routines of care shape each day.
Being immersed in illness routines involves continued separa-
tion from conventional life, prolonged immobility, and unchang-
ing time. Conventional life and earlier pursuits recede from the
present and fade into the past. Life consists of the repetitive
routines of managing illness. For example, seriously ill dialysis
—
Immersion in Illness — 83
patients must structure their lives around the rhythms of having
dialysis three days a week. Also, these patients must adapt to
their bodily rhythms during each day on dialysis and each day
off dialysis. Those rhythms seldom blend. May Morganson
slipped into illness routines after her forced retirement from
work due to kidney failure. She described her days:
And it seems like I don't really have that much spare time. It's
really surprising. . . . Sometimes dialysis is not [does not go]
very well, sometimes I'll come home feeling pretty bum. And
sometimes the next day it's not too good.
. .[Dialysis] just about takes up the day.
. I'm supposed . . .
to be on at 12:30, but sometimes then don't get on until 1:00, then

I'm dialyzed for four and a half hours and then it takes approxi-
mately half an hour to be taken off the machine and to have it
clot. So quite often it's 6:00 or 6:30 before I ever leave there. So
the day is shot
. .If I am not feeling very well, I'll stop at my daughter's for
.
half an hour or so and just rest, you know, sort of 'til I feel better,
and then I'll come on home.
Like many ill people, May Morganson limited her activities

so that she could get to dialysisand maintain herself no matter
how she felt. She also planned a few days ahead so that she
could rest during a terrible day. Identifying the symptoms or
procedures that cause further incapacitation helps to keep ill-
ness routine. May could anticipate the ill-effects of having a
blood transfusion. She remarked, "I just sort of think, 'Well,
now, I'm getting a blood transfusion today, I'd better plan on
not doing much of anything tomorrow/ And that's usually the
way it works."
May Morganson had to think about how to manage her rou-
tine because she lived alone. However, the routine can also
determine the day of a caregiver, or of an entire family, if there
is one (Corbin and Strauss 1988; Strong 1988).
What happens when someone becomes immersed in illness?

Pursuits narrow shrink. Boundaries of experience contract.
and
Control over time lessens. Though the extent of disability can
contribute to these shrinking boundaries, the social context has
Ron Rosato had atten-
greater significance. Like Harriet Binetti,
dant care after being in and out of nursing homes. He could not
feed himself or read, but he did watch TV "because there is
nothing else to do/' Although he had a kind attendant, Ron
had neither the intellectual stimulation nor the access to events
and activities that Harriet had. He possessed little control over
his life, while Harriet Binetti enjoyed considerable autonomy.
Ron had a room in his attendant's home; in contrast, Harriet
had her own apartment. Ron compared his past pursuits with
his present immobility: "I used to write a lot of poetry and I
used to do work, and I used to sing and write music and
art
play the harmonica. And all that stuff is nil now. It's not
around. So what do I do? Lie in bed. That's all I can do."
When an individual feels confined in a shrunken world, with
few opportunities to create a self, he or she will remain acutely
aware of the loss of self and may rail against it. Although Ron
Rosato viewed being in the board and care home as "1,000 de-
grees better than a nursing home," he still lacked control over his
life and his care. During the past few years, he had been buf-
fered from nursing home to acute hospital to nursing home.

Having these changes imposed upon him underscored his lack
of autonomy. When I asked him, "How has it been for you to
make these changes?" he said, "Well, I don't like it, but ... I
have no choice. And there again, that was my reasoning for
wanting to get out [of life]. And I think it's good reasoning."
The boundaries that someone's physical condition imposes
restrict social life and, hence, can limit the sense of self. In addi-
tion, physical and financial dependence evoke pejorative labels,
further constricting the boundaries of the self. And the longer
the boundaries of the self remain limited, the more repetitive life
becomes. Similarly, as illness continues, most people lose ways
of shaping and giving meaning to their days.
The television set connects many ill people to the world and
programs their day. Gloria Krause described the two years of
recuperating from multiple surgeries and radiation: "But I
didn't do much. I didn't do much socializing or anything. For
two years, I watched TV. I'd watch Johnny Carson every night.
I was a real nightowl —
I'd sleep in, then I'd get up by 11:30 or
12:30 and I'd watch TV. I was a pro. I'd watch Tom Snyder; he
Immersion in Illness hb 85
came on after Johnny Carson. I studied these people and I'd

know every move Johnny was going to do."
Of course, the rhythm and structure provided by television
programs can precede immersion in illness. For example, a
number of elderly people have long been wedded to their
television programs. Years later, they fill their days with the
restrictions imposed by illness and the incentives offered by
television. Seventy-eight year-old Bessie Thompkins fit an in-
terview with me in between her noon soap opera and after-
noon game show. When I asked her what an ordinary day was
like, she said:
I sit here.
[She elaborated matter of factly.] I generally get up between
8:00 and 8:30. There's nothing to get up for. On a regular day, I
have my breakfast, water my flowers, and take care of my plants

and I stuff. do my dish and spoon thatI have. I don't do any
housework around [home health aide] does it all. She

here; Stella
gets paid for it so why should I do it? [Laughs.] I have some
African violets that I planted from seeds growing. I pick up last
night's paper and I read that. I watch TV, my regular programs,
then at 12:00, I shut it off and fix my lunch [a serving of cottage
cheese]. Then at 12:30, 1 watch "As the World Turns."
When illness so limits life and steadily progresses, most

people — like Ron Rosato, May Morganson, and Bessie Thomp-
kins — find that their worlds shrink. But others like Harriet
Binetti and Nancy Swenson move between immersion and a
life founded on illness. Subsequently, they still retain ties to
conventional life. Because their separation from conventional
liferemains episodic and partial, rather than continuous and

complete, their worlds shrink more slowly.
Weathering a Serious Episode
A serious episode consumes life. Health deteriorates and

flare-ups get worse. Weathering a serious episode means suf-
fering through the upheavals of a progressive, unpredictable
illness. This immersion resembles having a devastating acute
illness, —
only it lasts and lasts. And recovery? Rather than
hope for total recovery, people just hope to regain limited
ill
functioning. Though illness may not threaten life immediately,

additional crises and possible death lie around every corner.
The vantage point for viewing immersion in a serious epi-
sode shapes its direction. When comparing a serious episode
with the boundaries and plateaus of immersion in routines, the
course of illness plunges downward. When compared to a cri-
sis, the course of illness creeps upward. The patient might live.
Still, his or her condition remains serious and the prognosis
risky. In short, immersion in a serious episode lies between

slipping into routines and being in crisis.
Nowadays, extremely ill people languish within lengthy seri-
ous episodes. Many elderly people and people with limited in-
surance find themselves dangling an inch above crisis yet still
immersed in illness. Twenty years ago, if they had lived at all,
they would have remained in the hospital. Now, hospitals send
them home. Here, the organization of care shapes medical defini-
tions of patients' conditions and decisions about how to handle
them.
Even if the crisis has "passed" and is in the past, residuals of it
create or compound the present immersion. Under these condi-
tions, ill people must cope with more; simultaneously, they have
less wherewithal with which to cope. The present overwhelms
them. The future looks worse. The threat of another crisis or
death remains. After a sixty- two-year-old woman had been dis-
charged from the hospital, she reflected upon her multiple medi-
cal crises: "I guess they are small strokes, but I don't know,
everytime it happens, there's less of me left."
Steady changes and constant setbacks shatter regimens and
rupture routines. Neither ill people nor their caregivers can
control their symptoms. Moreover, ill people may feel that they
cannot control their response to them. A young woman with
severe dermatitis and colitis said: "At that moment when
you're alone in your room, the itching is so bad you want to
claw your skin off or the pain is so bad . with colitis, [I'm]
. .
on
crying, sitting a toilet or just curling up in a ball in bed and
covering up my head and crying, crying. There was nothing I
Immersion in Illness m 87
could do. I just had great pain. I was out of control. My body
was taken over at that point."
Being captured and confined by a tormented body renders one
powerless. A middle-aged man's cancer and subsequent surger-
ies kept him in constant pain. No longer could he oversee the
household affairs. Nor could he even attend to his youngest
son's play-by-play recitation of the exploits of the basketball
team for which he had served as assistant coach. His pain drew
him into himself and his immediate experience of it. He la-
mented, "This [his illness] is awful; this is just disgusting. I can't
concentrate on anything [except the pain], can't get anything
done. All I do is move from the chair to the couch and back again
when it hurts too much. I can't even sleep in a bed anymore; it's
just too painful. There's nothing I can do to ease the pain."
As illness overtakes people, they lose the identifications from
the past; those, too, are swept away. Patricia Kennedy had
derived much pride from being a wife, supermom, community
volunteer, and church worker. She said, "[I recognized] that I
would no longer be able to do the things that I was involved in,
particularly the volunteer activities, which I have enjoyed, you
know, working well with kids and the liturgy work that I was
doing. I had lost . . . that identification of self — for right after
the diagnosis I was so ill that I had lost it — temporarily even the
parent, even the wife to a certain degree."
Time in Immersion and Immersion in Time
During time takes on new dimensions and meanings.

illness,
Chief among these is the feeling of becoming lost in time as well
as in illness. Further, different meanings of time emerge de-
pending on whether someone experiences a routine or serious
immersion in illness.
Unchanging Time
An immersion in routines leads to a sense of unchanging

time (Calkins 1970). The same set of experiences is repeated
—

with little variation; time seems static. The day moves in a cycle
—
reproducing yesterday and all the yesterdays before. The ill-
ness and treatment regimen changes slowly, if at all. 3 Sourkes
(1982:55) describes a "sense of being suspended in space and
time, without defined movement in either direction. ,,4 Thomas
Mann captures the essence of unchanging time in The Magic
Mountain:
For the moment we need only recall the swift flight of time
—
even of quite a considerable period of time which we spend in
bed when we are ill. All the days are nothing, but the same day
—
repeating itself or rather, since it is always the same day, it is
incorrect to speak of repetition, a continuous present, an iden-
tity, an everlastingness —
such words as these would better con-
vey the idea. . You are losing a sense of the demarcations of
. .
time, that its units are running together disappearing, and what
is being revealed to you as the true content of time is merely a
dimensionless present in which they bring you broth. (1924:183-

184)
Certainly, scant daily contact with few individuals contrib-

utes to a sense of unchanging time. Also, if those few people
merely expedite the routines of care, then their presence likely

adds to the patient's sense of unchanging time.
Days slip by. The same day keeps slipping by. Durations of
time lengthen since few events break up the day, week, or
month. Illness seems like one long uninterrupted duration of
time. A young woman recalled her four-year bout of colitis: "So
a lot of —
so my life just continued to stay the same. So I was
sick and I had the same dead-end job and yeah, it's all the
same. That felt very like nothing changed. So what's time when
nothing changes? It was slow then."
Most likely, the sameness of this woman's job magnified the
sameness of her illness. 5 For her, as well as for others, all her
endeavors melded into one long undifferentiated event. Sara
Shaw recalled that during the year she was incapacitated,
I lost all track of time that whole year. I didn't have a good
concept of time. I didn't know what day it was. . . . The whole
—
Immersion in Illness mm 89
year passed that way. When I think back to that year, if s like one
feeling. You know, when you are well, you're changing moods
all the time. But when I was sick, it was one feeling for an entire
year. I can snap back into that feeling of that year and its the
same thing. So to me it's like I could have been in bed.
Sara described the even unchanging time as "monochromatic

time/' a time that flowed without dimension, change, or color;
"it was all same shade of gray." She added, "[Time] was
the
definitely different than any way I had experienced time in my
life. And it was like a fog, you know, like having a fog around
me. And there were no real things to set it off. There . . .
weren't any markers."

An elderly man who lived in a board and care institution de-
scribed time as "endless boredom." For him, the institutional
and tensions scarcely punctured that boredom or
rituals, gossip,
punctuated time. Instead, time slipped away without meaning.
A lengthy hospitalization without improvement or decline
fosters slipping into routines. Hospital patients, too, found
that the stretched quality of unchanging time engulfed them
in a sea of dimensionless time, an ever-lengthening present
(Mann 1924). Mark Reinertsen described the blurring of time
during his lengthy hospitalization when he experienced trans-
plant rejection:
Oh time passes forever. Takes forever to — yeah — I never never

if it hadn't been for my transplant book, which you keep, and you
keep daily ... I wouldn't have known what day it was. And
when I'd get to the end of the month and I didn't know if there
were thirty or thirty-one days, I was really lost. I had great prob-
lems with that. . Everything can blend into each other, the
. .
—
moments because it's the same thing ... it can all become one
[duration of time] very easily.
Similarly, Carobeth Laird, who spent months in a nursing

home, observes, "Because of the timeless monotony of institu-
tional life, I have forgotten how long I was in The Ward. One
week? Ten days? Two weeks?" (1979:53). She, too, alludes to
unchanging time without meaning when she states, "Time
dragged on in its peculiarly timeless way, which can certainly
be understood only by those who have been confined in nurs-
ing homes or prisons" (1979:131). Yet a sense of unchanging
time also develops whenever anyone experiences a lengthy im-
mobilization from illness in a quasi-institutional setting.
As time slips away, existence and self also slip away. Hence,
when conventional ways of marking and experiencing time
dwindle, time, existence, and self disappear and may lose their
meaning altogether. For Mark Reinertsen, keeping his trans-
plant book did more than help him keep track of time; it also
kept him grounded in the self he had possessed before. He
explained, "It [keeping the transplant book] gave me a focus.
And you really do need to keep a focus when you're in the
hospital because you [the self] can float away so easily, float
right out the window and on the floor; that's not very good.
—
Yeah, and again I found that it was the same thing with
dialysis —
having a focus in your life [that preserved his sense of
self]/'
Though most people echoed Mark Reinertsen' s sentiments
about losing unchanging time, not everyone
self in a sea of
wished to keep anchored to a past self. A few people reveled in
the freedom that they found in loosening those anchors. A
young woman who was influenced by Zen Buddhism eluci-
dated: "My theory on time and space is that it's involved with
ourselves as we experience them, and if you lose a sense of time
and space you also lack a sense of self." She saw the self as a
type of "bondage" that rivets one to worldly concerns. Being
immersed in a stretched-out duration of illness had permitted
her unexpected spiritual discovery and development.
Dragging and Drifting Time
When an individual is plunged into a serious episode, two

main ways of experiencing time stand out: the dragging time of
pain and suffering, and the drifting time of loss of conscious-
ness. During the agony of pain, time lengthens. Moments ex-
—
pand and swell without end. No distractions only pain, end-
less pain. As one woman said, "I'd thought I'd been lying there
Immersion in Illness — 91
for hours, then I looked at the clock. Only twenty minutes had
passed."
Suffering extends beyond the body; it also saps the spirit
and fills the mind. Reminders of stigma, loss, or lack of con-
trol may also cause moments to stretch in length and to swell
with meaning. When Harriet Binetti tried to answer her doc-
tor's long-awaited call about her pain, her wheelchair got
stuck on a cabinet. This incident compressed her pain, lack of
control, and physical dependence into a protracted duration of
time. She recounted, "I was here alone and the phone
. . .
was ringing; nobody heard me yell for help, but Sally [her
attendant] had just gone to the store so she was back like right
away, but not that quick. You know twenty minutes seems like
twenty-two hours [then]."
Drifting time, in contrast, spreads out. Like a fan, drifting
time unfolds and expands during a serious immersion in ill-
ness. This time is the elusive, slowed time when an immobile
individual regains consciousness. Time drifts when action re-
mains so limited. Yet drifting time also includes the amor-
phous, floating time when someone slips in and out of sleep or
consciousness. Time elapses without awareness. Then, lengthy
periods of clock-time collapse quickly into seemingly short dura-
tions. Here, the fan closes and durations fold without se-
quence. A woman whose condition had worsened described
drifting time in this way: "It's a funny thing when I am that ill,
time just moves; it drifts on. I don't remember much I didn't —
think about dying, but I don't think about living either."
Immersion Time in Retrospect
Whether unchanging, dragging, or drifting, time seems dif-

ferent in retrospect than when experienced, depending upon
whether immersion essentially ends or continues. If illness
abates, then the prism of the present focuses views of the past
(Maines, Sugrue, and Katovich 1983; Mead 1932). Thus, return-
ing to "normal" pursuits results in changing images of the prop-
erties of one's past as well as one's present. The slow durations
of a past episode of illness collapse and condense into a single
event, which contrasts with present experience. For example,
when asked the young woman with colitis what the slow,
I
unchanging time during her illness looked liked five years later,
she quickly replied, "It seems like a wink."
As people collapse time in immersion, the length of their
separation from their ordinary life seems to shorten. Whole
periods of time can collapse into a forgotten void of experience,
ifhealth dramatically improves. In these circumstances, people
distance their earlier immersion in illness from self, like a dream
from which they They return to their prior
feel dissociated.
lives and selvesthough never separated from them.
as
In contrast, when people believe that illness might reoccur,
they may see a past immersion as a nightmare from which they
must extricate themselves. A woman who had had cancer said,
"I really don't like to go back into those memories; it was an
extremely painful time." In her second interview, another
woman said of the harrowing time when I first happened to
interview her, "I don't want to think about how I was then;
thinking about it might make it come back." These people disal-
low the content of the past to avoid repeating it in the future.
They close that chapter of their lives and edit it from their
biographies.
Memories of illness recede into the past when people can
resume their earlier lives or involve themselves in new worlds
with few reminders of the past illness. That way, they succeed
in keeping their illness apart from self. Of course, having no
further episodes of illness helps.
someone does not improve, things look and feel quite differ-
If
ently.The slowing of time continues. Chronology blurs. After

having had chronic fatigue syndrome for five years, Gregg
Fisher explains, "The years since I've been ill are especially
problem may lie in the fact that nothing terribly
blurry. Part of the
remarkable happens in my life anymore. Nothing changes, not
even the symptoms of my illness. While healthy people's lives
have memorable highs and lows, mine is static and stationary
and lacking in memorable experiences" (1987:28).
After slipping into illness routines, people may find some
comfort in their now familiar confinement. At least nothing
worse happens. The future seems to spread out, but with the
threat of danger and death. Subsequently, the self becomes

wedded These people hope that
to the ritual of daily routines.
following their ritual will stave off further crises and death
(Roth 1957). Yet, insulating oneself in routines can develop into
a permanent accommodation to illness. If this occurs, the per-
son probably cannot reinvent self or reconstruct a new life,
even if his or her health improves substantially.
Variations in Immersion
A lengthy immersion in illness shapes daily life and affects how

one experiences time. Conversely, ways of experiencing time
dialectically affect the qualities of immersion in illness. The pic-
ture above of immersion and time has sharp outlines. What
sources of variation soften or alter the picture of immersion and
time? The picture may vary according to the person's: 1) type of
illness, 2) kind of medications, 3) earlier time perspective, 4) life
and 5) goals.
situation,
The type of illness shapes the experience and way of relating
to time. Clearly, trying to manage diabetes necessitates gaining
a heightened awareness of timing the daily routines. But the
may remain much more subtle. People with
effects of the illness
Sjogren's syndrome, for example, may have periods of confu-
sion when they feel wholly out of synchrony with the world
around them. For them, things happen too quickly, precisely
when their bodies and minds function too slowly. Subse-
quently, they then may retreat into routines to protect them-
selves. Lupus must retreat because they cannot
patients usually
tolerate the sun. Sara Shaw covered her windows with black
blankets when she was extremely ill. Thus, her sense of chrono-
logical time became further distorted as day and night merged
together into an endless flow of illness.
Specific drugs time perspective and shape the experi-
alter
ence of illness. Remaining oriented and maintaining a prior
time perspective requires effort, just after having another trans-
plant, Mark Reinertsen mentioned, "I wasn't prepared for the
psychological effects of the high dosages of cortisone, that it is a
very spacey kind of drug; it makes it hard to concentrate on
things/' I asked, "What was time like for you?" He replied
quickly, "It was totally disoriented and I would know more
about that now and understand it, but I didn't expect that to
that degree."
When people treasure having a finely tuned sense of clock-
time, they actively resist relinquishing it despite being im-
mersed in illness. They preserve ways of marking time from

their past. For example, a housewife with multiple sclerosis
charted and organized her days around her husband's work
schedule and her children's schooling, as she had always done.
She fit the routines of her substantial care around their sched-
ules, rather than vice versa. A bookkeeper also tried to preserve
his sense of clock- time. His days at home and at the convales-
cent hospital mirrored the order of his former workday. He
timed and recorded his medications, food, and liquid in-take,
as well as his sleep patterns and treatments in a log he kept as
faithfully as he had kept the company books. Similarly, he
scheduled visitors one at a time in an appointment book and
refused to permit them to descend upon him unannounced.
Time perspective can also affect how readily someone
becomes immersed in illness. Maintaining the chronology of
earlier life helps to forestall such immersion. Conversely, inat-
tention to chronology and clock-time hastens sliding into it
and makes it easier to remain unaware of shifts in using time.
Sara Shaw remarked, "I don't have any conception of what a
year is, or two years is, or five years, or ten years. ... I have
never had a perception of time. ... I know things that hap-
pened and I have a lot of memory, but I don't mark it; I don't
have markers. ... I never was good about remembering what
day it was or things like that. And so I think I probably ac-
cepted it easier when I was sick."
A prior time structure similarly affects immersion. A tight
time structure with multiple responsibilities forces awareness
of— —
and most likely resentment about being immersed in ill-
ness. A young woman felt frustrated about spending weeks in
a darkened room because of lupus. She faced daily reminders
of her inability to function. She could not go to work. She could
not care for her toddler. She could not attend to the household
tasks. She saw the debts rise because they had so little money.
She saw her daughter bond with her mother-in-law who cared
for her. The continual disarray of the house and the steady diet
of sandwiches testified, she felt, to her inability to function.
With such tangible reminders of ties to a former time structure,
one resists becoming lulled by the routines of illness.
Consequences of Immersion
Prolonged immersion in illness takes its toll — upon social rela-

tionships and self. If life winnows down to immediate bodily
needs, a man or woman may turn inward to self and pose new
questions for self.
Social Isolation
Being immersed in lengthy periods isolates people.

illness for
As illness recasts and redirects their lives, they lose common
interests and no longer share pursuits with friends and associ-
ates from earlier days. And as they pull in to manage their
illness, these others slip away from them. Immersion in illness
erodes or entirely drowns most earlier friendships and casual
relationships. In turn, losing contact fuels taking refuge in
routines.
The resulting social isolation can be a natural sequel to ill-
ness. But the consequences of isolation are not entirely nega-

tive. One mandiscovered that it reduced distractions. Another
man decided that many of his relationships had been superfi-
cial. Furthermore, isolation allows people to reduce pressures
and to live at a tolerable pace. Before she became ill, Bonnie

Presley had many friends and suitors. While immersed in ill-
ness, she observed, "My friends aren't close anymore. I don't
know if it's me or what. ... I still keep in touch, but I hardly
ever see anybody. Since I moved here, I've become a hermit."
Iasked her, "How does that feel?" She replied, "It feels fine. I
can pace myself. I try to keep all pressures away no stress. — I
think that's important. Friends take time. It's unfortunate that

you have to look at it like that."
Most people remain sanguine about their shrinking so-
less
cial circles. When Mark Reinertsen was immobilized at home,
he said, "I have an inner circle of close friends but I don't have
that second circle of casual friends and acquaintances from
which to replace them. There aren't many new people coming
into my life."
Whether or not someone lives alone can crucially affect the
degree of social isolation. Married people may have a family
around them, although they often become isolated from friends,
associates, and neighbors. Single people with relatives nearby
also may have sustained contact with them. When the family
consists of married children, however, visits may dwindle to
brief checks and errands. An older woman who had been ill for
over ten years reflected, "And the friends drift away; the rela-
tives forget you, even your closest ones, when you are sick. Oh,
everyone is all concerned when something happens and you are
sick for a while, but if it lasts, if it is chronic, then they forget you
and don't help you. Even my own children have never said,
'Mother, is there anything I can get you?' " (Charmaz 1973:35).
Generally, family provides the major buffer against social iso-
lation. For this reason, single people without family nearby
often find themselves quite isolated. Several single people cre-
ated novel ways of developing or maintaining involvements
and as a consequence received assistance and support when
they needed it. Mark Reinertsen invited friends to potluck din-
ners at his house when he was too ill to leave. A middle-aged
woman devised a schedule for several friends to make regular
visits and phone checks. An elderly woman joined a telephone
chain in which a volunteer called her at the same time every
morning and she, in turn, called someone else each evening.
Ostensibly, the service was designed to check on whether the
person had suddenly deteriorated or died, but these elderly
women used it to socialize. Their friendships blossomed as
they listened to each other's tales about their families, health,
and troubles.
Isolation accelerates in old age since many chronically ill el-
ders' social horizons have already shrunk. Unless they possess

substantial power, prestige, or property, they cannot bring the
outside world into their homes. Even when ill people can bring
outsiders in, try as they may, they seldom can keep them com-
ing back beyond the specific task at hand. For example, an
elderly man When he decided to sell
did not leave his house.
his huge he cultivated a relationship with the appraiser
library,
who also managed the sales. For a few months, the appraiser
came every week or so to pay him and to visit. However, the
visits dwindled and ended within a month after they finished
their business.
Regular assistance, in contrast, offers better opportunities for
social contact and for changing a formal relationship into an
intimate one. Elderly people transform a home health aide or
volunteer into a friend, or at least a welcome break in their
routinized existence. An elderly man supplied the food that his
home health aide fixed for both of them. After eating alone for
many years, he enjoyed the companionship as they ate and
watched television together. Bessie Thompkins elevated Stella,
her home health aide, from a hired assistant to a friend to a
family member. Because Stella had been divorced for a long
time and had no children, Bessie included her in family holi-
days at her daughter's home and described Stella as a member
of her family. Despite such creative efforts to reduce isolation,
ill people's relationships typically dwindle and their worlds
shrink.
Even superficial sociability can assume weighty symbolic sig-
nificance to an isolated person. Such sociability affirms that
ill
the self remains, that illness has not claimed all of one's being.
The significance of social contact lies in its meaning. Many ill
people, especially elders, welcome social contact from whom-
ever they can get it — the meals-on-wheels driver, the door-to-
door missionary selling salvation, or the visiting nurse. Other
people remain more aloof. Sadly, the infrequent phone calls of a
son or daughter who never visits may mean more to an aged
parent than solicitous daily care given by someone else (Calkins
1972). For them, time has definition and meaning only during
the fleeting moments with a significant other.
Typically, social isolation translates directly into emotional
isolation and loneliness (Lopata 1969). Loneliness intensifies
when intimates identify the ill person as someone who has
I
seriously ill mother, "She's totally invasive, always been that
way, and now that she is so sick, she not only has a reason for
being invasive, she can really take over our lives." Hence, rela-
tives decrease their involvement or they limit the "legitimate
demands" that the ill person can make. Frequently, friends
avoid being burdened with the ill person's loneliness. Further,
friends and relatives tacitly define the ill person as someone
whom they can treat in this circumscribed manner. Simulta-
neously, they may impart the double message of telling the
person to ask for help. An elderly woman explained, "The atti-
tude is, If I can do anything for you, just ask.' But don't ask! It is
just an empty statement and they give you all these messages
that you'd just better not ask. People say that to make them-
selves feel better, not you. And you had better not rely on
them, or else you'll be awfully hurt, and maybe in a very bad
pinch" (Charmaz 1973:36).
Certainly relatives' and friends' perceptions of the ill person
affect the extent of their involvement. A fear of being overbur-
dened might reflect a fear of illness and death. Also, strained
interactions with the ill person can drive visitors away (Davis
1961). Without a social facade and superficial chitchat — that is,
without safe discourse — being with the ill one can panic visi-
tors. If someone refuses to talk about anything except the ill-
ness or will not talk at all, then just the most stalwart visitors
keep coming.
Social isolation tends to be self-perpetuating. Isolation and
immersion development of
in a devastating illness foster the
interactional styles that not only appear strange to others but
serve to estrange them. For example, ill people can appeal to
the sympathy or guilt of others through their "sad tales"
(Goffman 1961a). Then, they try to trap family and friends into
tighter bonds of intimacy or to entice new acquaintances into
instant intimacy. In either case, this intimacy portends of exten-
sive obligations. For a period, these others may attend to the ill
persons simply because of the immediacy of their plight, or
even because of guilt. But negative emotions grate, and guilt
wears thin. Subsequently, an ill person may test others' loyalty
and commitment precisely when they begin to ease themselves
out of the relationship. Such testing intensifies the wish to drop

the ill individual. Over time, ill people may come to believe that
in order to reduce their isolation, they must force others to
sense the pathos in their lives. Then should new acquaintances
again happen to come these ill people's way, they repeat the
scenario with renewed intensity and thus unwittingly perpetu-
ate their own isolation.
Perhaps the most negative consequences of social isolation
occur when people are poor and without access to social ser-
vices. Poverty reinforces social isolation. In turn, poverty and
social isolation trap people in a quagmire of immersion in ill-
ness (see Hopper 1981). Lacking both the social resources and
the financial assets to help themselves, ill people can slip fur-
ther and further into narrowed worlds and diminished lives.
Turning Inward
Increasing immersion in illness leads to becoming consumed

by needs and feelings; people turn inward. Turning inward to
self ranges from explicit, direct, and immediate focusing on the
ill self to broader self-concerns that a person relates to illness. In
the former, illness threatens to overtake or to overwhelm the

individual — now. By the time he was thirty-seven, Mark Rei-
nertsen's numerous acute illnesses, setbacks, and iatrogenic
conditions had taken their toll. He disclosed, "I see myself as
being on the edge. I feel fragile now. It's something that's
cropped up in the last year. I feel older. I feel like an aged
person. My body, whole body, creaks; it hurts like arthritis."
I said, "Tell me what being on the edge means to you." He
reflected, "It's that feeling of not being in control; that's being

—
on the edge. That's the hardest part not that I am so active in
my life. I don't work or go to school or anything. But just being
able to get out and take a walk. Not being able to make it
. . .
across a full parking lot. Feeling that I couldn't make it is real

scary."
"Being on the edge" for Mark also signaled his awareness of
death, a death beyond his control. He said, "That fear has been
100 hi EXPERIENCING CHRONIC ILLNESS
getting stronger. I've noticed it. I've tried not to let it rule my
life — the fear that I won't be in control, can't function. I don't
know where it will end but at a certain point, I may decide not
to stay around. I try not to let it worry me but. ..."
When people turn inward, they retreat into self. A middle-
aged man looked back at the onset of his illness twenty-three
years before:
I just got freaked out. I remember that I got — I don't know how
to —
put it I got sort of parsimonious, not really with money but
with myself. It was like I had to stay here more [indicates close to
his body], back here. That going out there [indicates away from
his body] and not noticing what I was doing or how much I was
laying out had nearly somehow been the undoing of me and
now I had to consolidate and play my cards close to my chest and
become circumspect.
Ill people turn inward to self primarily during crises, routine
immersions, or whenever they lose hope. Doing so can point to

a crisis of meaning. The man above recalled:
Iwithdrew a lot. I got very afraid. I became very circumspect as I

had not been before. Now in part, this was because I wasn't
getting drunk anymore, I suppose. But it was just like you —
—
know I realized that I didn't lead a charmed life and disaster
could strike me as anyone else, which had been an idea before
that I had entertained but it is not the same as when you see that
it is true.
As self-consciousness grows, ill people's awareness of oth-

ers' needs often shrinks, even if they had been quite consider-
ate earlier. 6 An older man told me, "My wife thinks I've become
too demanding and expect too much help from her. " Then, too,
any prior tendency for self-involvement overpowers other con-
cerns and fills the crevices of conversations.
A recurrence or spiraling complications may so involve ill
people that they do not realize how immersed in illness they
have become and how it has caused them to turn inward. Dur-
ing a visit from a close friend, Mark Reinertsen noted:
Immersion in Illness m 101
I realizedwasn't talking about anything but my medical prob-
I
lems. In one way it was OK because that's what was going on

anyway and so it is reasonable to share that with your friends
and on the other side, like for lately that's all they've been hear-
ing and for me it sounds like all I've been saying. Then it's time
to stop and ask, "what is going on?" It seemed like that [illness]
was pretty much dominating my life.
Turning inward usually intensifies as someone moves closer

to death. Although many people cannot state their thoughts
and feelings directly, their faces and gestures dramatize their
concerns. A woman reported that her husband with emphy-
sema coughed and moaned noticeably more and talked less
throughout a than he did otherwise. A man with
visitor's stay
heart disease became distracted, depressed, and withdrawn,
his eyes mirrors of fear.
Identity Questioning
Identity questioning often results from immersion in illness.

Social isolation also can prompt identity questioning. Ill people
wonder where them and ask who they can be
illness will take
—
during their odyssey for self and for others. At this point,
illness serves as both foundation and focal point of their experi-
ence. Ill people ask:
Who will be? I
How will this condition affect my future?

How can continue to be myself while
I having relentless
illness?
What will being dependent do to me?
Thus, identity questioning means: 1) acknowledging the

identifications of self in the present, 2) comparing past identity
with that of the present, and 3) wondering what identity one
will have in the future. Hence, identity questioning involves
wondering if the present identity founded in illness will
become permanent and override other sources of identity.
102 ™ EXPERIENCING CHRONIC ILLNESS
Identity questioning can also include asking what was learned
about self through illness and how to use it, should a return to
a former life become possible.
Identity questioning can lead to feelings of being horrified
and overwhelmed by one's body. To illustrate, a woman who
experienced progressive deterioration said, "I couldn't believe
it was me. Is this what I can expect?" In this case, the person
learns that a past self may not be regained.

Dependency spurs identity questioning. The threat of perma-
nent dependency strips away earlier self-definitions based
upon independence. When facing another round of chemother-
apy, one woman with cancer recalled her first immersion in
illness. She said, "I was totally physically dependent on Norma
[her lover] and I didn't like it. I didn't likeit. That was worse
than the treatment. I think I can face anything again but that
feeling of total dependency. You lose yourself."
Many of the positive identifications of the past are swept or
ripped away by illness. Without them, ill people become open
to accepting the identifications imposed by others and may
even seek them. As caregivers and medical functionaries gain
control over ill people's experience, they may also control the
defining images of ill people's selves. Yet these images may
seem inconsistent with a past self. If that happens, then iden-
tity questioning develops.
Sometimes practitioners impose images of a discredited self
widely divergent from an ill person's earlier self-concept (Goff-
man 1963). As the foundation of that earlier self crumbles, these
images become real. A young woman described the discredit-
ing evaluation she experienced in a medical clinic:
You are raked across the coals and torn apart bit by bit until you
areno longer the person you thought you were. It seems odd to
me that if a person has a conscience at all, they feel bad enough
about not working, or pursuing their studies to establish their
independence, and then to be dependent on others when you
used to be independent without being torn apart whether . . .
you could do anything, no matter how conscientious it all —

doesn't matter; they are clawing you apart. It is a shattering
experience, especially if it is repeated. (Charmaz 1973:41)
—
Immersion in Illness « 103

This woman had already been shattered by illness and, there-
fore, looked to her physicians for some sign of hope for a more
promising future. She said, "What else can you do [but let
others define you] if you don't know who you are by then? . . .
If your previous definition, or basis, or whatever, has been
knocked all to smithereens, you are left with their definition

it's all you have" (Charmaz 1973:45).
Identity questioning also arises from having time to reflect,

uninterrupted by the trivia of daily life. Here, identity question-
ing brings different lessons. Ill people gain a sense of resolution
and self-awareness, despite the identities cast upon them. Bon-
nie Presley remarked:
I dealt with a lot last year when I was sick because I think I had
the time to do it. I had nothing else to do. You know, I wasn't
working; I was in bed a lot. And what do you do if you're in bed
a lot you don't take drugs? I couldn't read. I couldn't concen-
if
trate. Yeah. So I just —

my mind was just always thinking. I guess
I worked out a lot of things.
. What else did I work out? I guess overall would be self-

. .
acceptance. And I don't care if I'm married or not anymore. That

I don't care if I have a man or not. That I've learned to accept that
I can't push myself into being one thing, which I wanted to be.
I'm a lot of things.
Losing the regularity of clock-time can allow for greater

depth of thought. Sara Shaw welcomed the loss of clock-time:
"Any kind of real thought, if you have to be interrupted every
fifteen minutes, you're going to lose that [thought] anyway,
and so in your life, how are you going to make how are you —
going to do any real thinking on what you are and what your
life is and things, if you have all these things, these markers,
and these days and nights going on? [Laughs.] So I think it

—
was I don't think I fought that at all."
This immersion in illness then sparks an internal dialogue
with self about self. Through the dialogue, people came to re-
ject the negative images of self that earlier they had accepted.
Instead, those images impelled them to discover and to define
themselves. Under these conditions, identity questioning gives
104 _ EXPERIENCING CHRONIC ILLNESS
rise to a more resolute, immutable self, less swayed by social
forces. For one woman, immersion brought both a
in illness
freeing of the spirit and a burdening of the self. She said:
To me it's [immersion in moving toward spiritual

illness] sort of
states where you do lose a sense of self and time as a release. I
mean self is a kind of bondage in a —
way so it's wonderful you —
move toward heaven to not have— that burden. But the other
thing, of course, is that we are here. I exist as Jane so Jane comes
back and wants to exist. So that's the hellish side. The thing is
that you're kind of lost outside of time. You can't get a grip
. . .
on things. That was part of the helpless side of being sick is that
—
time you do feel that time is passing by in terms of being a
human being and identity and something we all feel like we —
have something to do. You feel like you're drifting; things aren't
getting done; you're older.
PART
Problems in Everyday Life
In Part showed how people's experience of time changes when they

I, I
have chronic illnesses. What ill people need to do in a day affects their
experience of time. The day shortens when chronic illness imposes a set
of chores and needs upon an already hectic schedule. The day lengthens
when ill people's activities shrink to waiting to get well or to improve.
In Part turn to practical problems of living with chronic illness.
II, I
Chapter 5 considers the problems that ill people face in talking about
their conditions. They find that how and when to tell other people pose
perturbing problems — repeatedly. The fact of illness can take on enor-
mous significance for images and definitions of self. A shocking diagno-
sis, an invisible impairment, a growing disability, a terminal prognosis
can make telling and talking frightful and painful. Practical problems
in telling and talking mirror the meanings of illness for the emerging
self. When the meanings are heavy ones, people often agonize over
telling others about their illnesses. I emphasize this type of telling since
so manyof my respondents dwelled upon it.
meanings change if illness recedes into the background of life.
Yet
Hence, someone may talk openly about a diagnosis at first, selectively,
if diminished by other people's judgments, and scarcely at all, if much
time passes between episodes.

In Chapter 6, I discuss living with chronic illness and expand upon
the problems in reordering time that occur when illness becomes intru-
sive. what an intrusive illness means. In
In Chapter 3, I described
Chapter 6, I look at how people live with an intrusive illness. All the
logistical problems of planning, organizing, pacing, and juggling neces-
sitated by a chronic illness blend with everyday life, often in taken-for-

granted ways. Throughout the chapter, focus on how people adapt
I
themselves and their days and, sometimes, invent ways to handle their
lives. Certainly, major ways of adapting include narrowing one's
105
1 06 mb Problems in Everyday Life
pursuits, eliminating tasks, and staying home. These adaptations may

occur so gradually or coincide so exactly with other life changes, such as
retirement, that people may remain unaware of the effects of illness.
In contrast, immediate responsibilities like raising children and get-
ting to work often prompt people to give explicit scrutiny to planning
shortcuts and timesavers. Because regimens blend with everyday life, I
treat them as part of the daily work with which ill people concern
themselves. Whether people invent strategies to help them remain ac-
tive or adapt by slowing down, daily living with chronic illness pro-
vides important lessons about ill people's developing selves.
5
Disclosing Illness
I would feel like if I got sick again that the same

think that emotionally I
stuff would happen again in terms of that I would be real alone, and
that I would have to deal with everything alone, that I couldn't tell
anyone that I was sick and that I wouldn't be able to take care of myself
but that I wouldn't be able to ask for help. And to be in that is a real
double bind, you know?
Sara Shaw became ill sixteen years ago. After several years of
having her symptoms discounted, she received a diagnosis of
lupus erythematosus, which was changed to mixed collagen
disease five years ago. She made the above statement nine
years ago. Two years after that interview, she said, "If I were to
start going with somebody pretty heavily, how would I tell
them about having been sick, the possibility that I could be sick
—
again that scares me to death." I asked, "So it's not something
that comes up in your friendships?" She said:
Yeah, actually everyone that I've talked to or been real close to

that I'm friends with, Fve told that I was sick. I don't tend to say
that I am sick now. I don't tend to say it in terms of the present
tense, or in terms of an ongoing, a chronic, illness. But I also . . .
wonder if anyone would understand if I were to get involved

with somebody to the point of marriage, the point of sharing
lives. I have very little balance on that question.
Three years later, Sara disclosed, "I don't think I do trust

anybody in terms of letting them know about having been sick,
even though I'm not sick now. That's something like that is
kind of secret." Subsequently, two years later, seven years after
her first statement above, she remarked:
107
108 — PROBLEMS IN EVERYDAY LIFE
It's and near-death experience] like a prestige thing

[her illness
now, I mean gone through a near-death experience at
that I've
ALU [the university where she worked] is like, I mean I'm one
level higher, you know, for that. That comes out quickly, you
. . .
know, in whatever way it comes out. That started [for her] with
FPI [a psychological institute specializing in intensive workshops
using simulated families to work on family-of-origin issues]. . . .
I was able to bring that out and say I had a lot of fears around . . .
—
having being intimate and letting people know, you know, that
I had had, that I get sick sometimes and because I talked to them
about everything, the people that I'm close to in that family. . . .
I never thought I could say stuff like that because then I thought
that they would need, they would feel that they would need to
change me, or heal me, or fix me. And we don't have to do that
to each other, we're just sharing our lives, that's it, you know. So
that's real new. Yeah, but I do that now. I'm not seeing anybody
romantically, so I haven't had to deal with that. Uhm, but I think
I would tell because what's happened is I'm not willing enough
to abandon myself to where I wouldn't bring that up. I would

want someone to know now.
To tell or not to tell? How much to tell? Risk disclosure but

face rejection? Sara Shaw pondered over these questions for
years. When she first became ill, the young man with whom
she lived left three days before her exploratory surgery. Later,
when her doctor told her that she would need care, she found
that she had no one on whom she could rely. Not surprisingly,
she grew secretive about her past illness and any present symp-
toms. Disclosing illness meant heavy risks.
For Sara Shaw, like others, disclosing illness meant revealing
her feelings and vulnerabilities. Disclosing is a form of telling in
which someone reveals self. When one discloses illness, facts
and feelings about it touch one's self-concept and self-esteem
(Jourard 1971; Zerubavel 1982). Still, an individual's stance to-
ward disclosure may change with time, as Sara's did, as experi-
ences change and as new perspectives are gained.
How do chronically ill people handle telling others about
their illnesses? What does disclosure and avoiding disclosure
mean to them? When do they disclose? How do they manage
1
Disclosing Illness mm 1 09
theiremotions about disclosing? What concerns do ill people

have about others' responses to their disclosures?
Dilemmas of Disclosing Illness
Chronically ill people wonder what they should tell and what
they need to tell others about their illnesses. Kathleen Lewis,
who has lupus erythematosus, begins her book, " 'How are
you?' can perhaps become the most difficult question a chroni-
cally ill person needs to learn to answer" (1985:3). Telling any-
thing about illness can mean revealing potentially discrediting
information about self (Schneider and Conrad 1980; 1983). Tell-
ing often means exposing hidden feelings. Telling sometimes
means straining relationships. Telling can also mean risking
loss of control and autonomy (Cozby 1973). Hence, some men
and women will not tell family, friends, and associates that they
have a chronic illness, and many others avoid updating people
about their conditions. Other ill people take the risk or feel
compelled to apprise select individuals about their situations.
Telling does not end. Physicians can impart bad news and
depart (Clark and La Beff 1982; Glaser 1966; Glaser and Strauss
1965; Sudnow 1967; Taylor 1988). Unlike physicians, chronically
ill people must tell and retell their news to many people and
frequently do so at each step along the path that their illness

takes. Moreover, they must live with the telling.
Perhaps most fundamentally, young and middle-aged adults
risk losing acceptance by telling; older adults risk losing au-
tonomy. Young and middle-aged adults can find themselves
ignored, rejected, and stigmatized when they disclose their ill-
nesses (Goffman 1963; Hopper 1981; Schneider and Conrad
1983). Not only must they handle their feelings about telling,
but also they must handle their feelings about another's re-
sponse to being told. Lovers, spouses, friends, and jobs may
vanish from their lives. Of course, older adults experience these
responses, too, but many older adults, particularly single el-
derly women, already have only a frail hold on their autonomy.
Adult children or service providers, concerned about the safety
of these elderly people or the quality of their housekeeping,

may see their illness as a reason to grasp more control over
them. For these older adults, telling means losing control over
their homes, money, their decisions in
their mobility, their —
short, their lives. Meanwhile, they also must handle losing
their health.
—
Thus, the dilemmas of disclosing turn on control control of
identity, control over information, control over emotional re-
sponse, and control over one's life. Hence, avoiding disclosure
entirely, maintaining distance, metering disclosures, censoring
information, and pacing disclosures all become ways of preserv-
ing control.
Avoiding Disclosure
Given the potential costs, avoiding disclosure can be a natural

response to illness. Avoiding disclosure takes a different twist
than concealing illness. When people avoid disclosure, they try
to circumvent or minimize others' attending to their health sta-
tus. Concealing illness often takes an enormous amount of com-
mitment, planning, and work. When people conceal illness,
they shroud it in secrecy. Avoiding disclosure can be easier and
may reflect a spontaneous decision during the course of a conver-
sation. By avoiding disclosure, people try to keep their illness
understated in a relationship, or in their lives, more generally.
Certainly an underlying reason for either concealing illness or
for avoiding disclosure turns on whether someone grants illness
any reality at all, and, if so, what kind of reality.
Both concealing illness and avoiding disclosure distance ill-
ness from the self and avoid stigma. Yet a serious exacerbation
can puncture a long-maintained secrecy. As her disability
progressed, Tina Reidel tried to hide it in public and, thus,
attempted to avoid stigma. During a recent interview, she de-
scribed the embarrassment she had felt that morning when
she could hardly walk through a department store:
When I got up, after having my makeup done, I felt like I could
hardly walk and I kept thinking, "I hope nobody notices, you
Disclosing Illness ^111
know, that I'm really this way, that I can hardly walk." . . . It's
like I think that other people could perceive the way I perceive
myself, but they can't. So it's like I try to keep it hidden. ... I
think it'sembarrassing. You know, like say if someone can

real
see that I can hardly walk or something, I'm all stooped over or
you know, I catch a glimpse of myself in ah, like a window, it's
very shocking sometimes what I see.
I asked, "In which way?" She said:
Well, can see that, other people can see is that, you know, my
I
leg, can hardly walk on it. And I feel like somehow I'm not a
I
whole person and people can look at it and feel sympa-

. . .
thetic, but they can look at you and see you as being less than
whole, you know. And ah, it's frightening, I guess.
. . . . . .
This idea of getting foot surgery and it's really scary because I
don't think I'd be able to walk for about three months; I'd have
to wear those bunny boots [removable casts]. And just the idea
of like trying to go out in the world and it being like more
apparent, that's the scariest part. It's not so much the pain I'd
go through or anything, it's just that they'd know. It's like I'd
—
be you know, people could see.
A visible disability does not permit choice about whom to

tell, when to tell, how
Under these conditions, infor-
or to tell.
mation about self once held private becomes public knowledge

and floods self as well as potentially flooding interaction. At
that point, ill people often feel forced to face their feelings and
values about disability.
Until disability becomes a visible and continuing fact, some-
one who avoids disclosure can more readily treat illness as a
temporary interruption, rather than as a chronic condition. The
possibility of effective medical procedures in the future can
further this stance. For example, a kidney dialysis patient
looked well, functioned quite well at work, and believed that he
was in much better shape than other patients on the dialysis
unit. Since he did not want to be identified as ill or disabled, he
told no one beyond his family about his illness. He said, "I'm
not really ill at all from this thing. And I'm perfectly able to
keep working. It takes a little time to be on the machine, but I
just schedule around it. It's really a very minor part of my life.
And who knows? A transplant might become available and
then this [dialysis] will be over."
Further, avoiding disclosure limits the reality of illness to self
and for others. Lara Cobert recalled her first episode: "I remem-
ber not talking a lot about it, not telling a lot of people. Talking
about it would make it real and I didn't want to think of it as
permanent." Thus, avoiding disclosure allows claiming other
identities than illness. To the extent that concealing illness and
avoiding disclosure work, these strategies limit stigma and sup-
port preferred self-images.
Perhaps more commonly, ill people refuse to grant illness
legitimacy to shape their lives and self-concepts. They do not
wish to exploit their illness to their advantage. Bonnie Presley
toyed with telling her accounting teacher that her illness had
prevented her from completing an assignment. She said, "It's
almost like you'd be using it, do you know what I mean? It sort
of feels like that. You know about —
with teachers you hear —
about all these teachers and they say this guy said this and this
girl said this and T have so many people lose their grandmoth-
ers,' and, you know, all these excuses for not doing their work.
But everybody else has reasons too why they can't get it done,
so I'm no different."
People with invisible illnesses often refused to grant legiti-
macy to the special needs that their illnesses engendered, and
therefore, they chose not to disclose. Occasionally, they de-
ferred to someone else's physical needs. For example, when the
elevator stopped running just before my seminar, a student
who used a wheelchair phoned to request that the class meet
on the lawn. The class members agreed but several weeks later,
a student who had multiple sclerosis told me, "I should have
never gone out with the class; it was just too hot for me that day
and I can't take the heat, but at the time, I thought Connie's
needs were greater than mine. So I didn't say anything."
Potential Losses and Risks
In addition to the ultimate risks of losing acceptance and

autonomy, ill people face immediate interactional risks: 1) being
3
Disclosing Illness 1 1
rejected for disclosing and for having an illness

and stigmatized
(cf. Ponse1976), 2) being unable to handle others' responses,
and 3) losing control over their emotions.
When people believe that they risk losing or assuredly will —
lose —
status or self-esteem, they avoid disclosing illness. Lin
Bell would not tell her co-workers when she had angina attacks.
Instead, she tried to hide when she took her nitroglyercine so
that her temporary distress would remain unnoticed. However,
her tactics did not always work. She said:
Somebody saw me and you know how word gets around. I was
hiding behind a cage, kind of bent over, taking [the pill] well —
she went running to the supervisor and he sent somebody else
—
over to see how I was doing I was just having an angina attack.
No worse than what I had before the heart attack. Now they're
scared to death I'm going to have one there. And I don't want
them to think that I can't keep up, 'cause they don't have to give
me a light duty assignment. There's a lot of pressures in this
world.
The people who'll support me — —
it's the ones
are fine
it's
who think they're being my by running and saying, you

friend
know, "Watch Lin, she'll go lay down or something." If I do if —
they do that too often, the [management] is going to say,
. . .
"Hey, let's get her out of here. Why pay $13.00 an hour to some-
body who can't keep up?"
Most men and women want to be known for attributes other

than illness. Therefore, they will conceal illness or avoid disclo-
sures when they see that illness could cloud other people's
images and judgments of them. They will not take the risk.
Because photo journalist Roger Ressmeyer would not allow his
diabetes to flood his identity, he decided not to disclose it at
work. During one incident, he risked possible residual brain
damage or even death from insulin shock rather than request
—
minimal help and thereby disclose his illness. He writes:
I had forgotten to bring some food along. I napped intermit-

tently, vaguely more aware that the insulin injection I had taken
earlier that morning was reaching its peak and my need for food
was becoming critical. But I was too tired and embarrassed to
mention my rapidly worsening condition to the well-known
114™ PROBLEMS IN EVERYDAY LIFE
news photographer next to me, or to the driver or to anyone who
might have had the apple or candy that would have saved me.
When I awoke, as from a dream, I was horrified to discover
that I was standing on the street in front of a deli in Cocoa Beach
with a half -empty bottle of orange juice in my hand. My head
was throbbing and my body was shuddering. Hours had obvi-
ously passed, since the printed image of the shuttle launch
stared at me from a newspaper rack. I had no recall of walking to
the deli, or the missing hours. Many diabetics have accidents
under exactly the same conditions but some angel must have
been watching me. (1983:8)
Knotty problems, shaky relationships, and harsh judgments

make disclosing a dilemma. Subsequently, people avoid disclos-
ing for months, or even years. To an older woman, her hus-
band's alcoholism and consequent chronic illnesses seemed
much more pressing than her own illness and growing disabil-
ity. Though she had known for five years that she had lupus
erythematosus, she had not told her husband about it. Tenuous
or hostile relations can also increase an individual's proclivity
not to tell. For example, a middle-aged man with cancer faced
an uncertain future. Three years earlier, he had divorced his
wife after a hostile separation and nasty legal battle. Although
he had severed contact with her and their daughter, he contin-
ued to feel unrelenting rage toward his ex-wife whom, he be-
lieved, had poisoned their daughter against him. He vowed
that the first news either of them would have about his illness
would be in his obituary.
Fear of being thought of as a complainer or whiner dissuades
people from discussing their illnesses. Christine Danforth said:
Ifyou have lupus, I mean one day it's my liver; one day it's my
joints;one day it's my head, and it's like people really think
you're a hypochondriac if you keep complaining about different
ailments. . It's like you don't want to say anything because
. .
people are going to start thinking, you know, "God, don't go

near her, all —
she is is complaining about this." And I think
that's whynever say anything because I feel like everything I
I
have is related one way or another to the lupus but most of the
people don't know I have lupus, and even those that do are not
Disclosing Illness™ 115
going to believe that ten different ailments are the same thing.
And I don't want anybody saying, you know, [that] they don't
want to come around me because I complain.
A tendency to avoid disclosure intensifies when ill people

had not talked about previous illnesses or feelings. Christine
Danforth's father had died a painful death from cancer, but no
one in the family had ever discussed his pain and suffering.
Similar patterns repeat themselves. Christine believed that her
mother knew her diagnosis but not what it meant. Not only did
Christine resist revealing her discomfort, but also, when she
did disclose, others did not believe her. She said, "My friends
would call and say 'Let's go here or let's go there,' and I'd say, 'I
can't; I just can't walk,' and they'd say, 'Pulling another Elise
[her sister who as a child used her back injury as an excuse to
get out of chores], huh?' So I never, ever would say that I hurt
when they called. Ever."
Once ill people have proof that others will use their disclo-
sures against them, they guard against disclosing. Even people
who had earlier revealed their feelings, as well as their condi-
tions, become circumspect and guarded after discovering that
someone used their disclosures against them. Patricia Kennedy
recalled that for a lengthy period, "I became very, very careful."
Like many other ill people, she learned to answer questions
about how she was feeling by saying, "I'm fine."
Having a condition that everyone "knows" about raises spe-
cial risks of disclosing. These conditions elicit probing questions
about health habits and regimen, which, in turn, can escalate
into continuing criticism. Though irritating enough to have
one's private behavior relegated to public discourse and evalua-
tion, the criticism can sting already open wounds. And when
this happens, the judgments stick. Such criticism reflects an
objectified version of similar silent inner dialogues ill people
have long had in which they berate themselves about their diffi-
culties or failures in following their regimens. Lin Bell remarked:
I think the not telling is that I I am so

smoke. ... guilty for that.
And yet I'm not willing to quit. And when you tell somebody
you smoke and you have heart disease, a little computer in their
head goes, "Hey, this person is self-destructive," and I'm tired of

hearing that, 'cause I'm not. I know that I'm smoking, Kathy; I
know that it doesn't help me. But I am not self-destructive. I
don't have a death wish at all.
Risking disclosure extends into whether to claim having spe-

cial needs, or to acknowledge hardships, long after everyone
knows the diagnosis. Maureen Murphy's employers had forced
her to take a disability leave for a year because of her diagnosis
of multiple sclerosis. When she returned to work, they switched
her to a less physically demanding job in another department
with much less pay. After not working for a year, she felt grate-
ful to have a job at all and therefore concealed any indication
that the work was too strenuous for her. She recalled, "When I
first started [working] there, I was doing filing and that got me
tired, but I remember, you know, 'cause they didn't know

—
what where I would fit in, and so they decided to let me file
for a little. And I didn't dare say a thing about being tired
because I thought, 'Oh, God, they'll bounce me out of here/
you know. And, oh, that first day I was ready to drop."
Similar issues arise in relationships. For example, his respira-
tory therapist observed that keeping pace with his much health-
ier wife wore out a sixty-eight-year-old man with emphysema
and heart disease. But he wouldn't tell his wife that he needed
to slow down because he felt so guilty about draining their
finances for his care. He wanted, at least, to help her with daily
chores. He risked more rapid deterioration to gain a more favor-
able image in her eyes. For single ill people, the mere thought
of repeatedly explaining their inability to maintain a new
friend's pace can stifle romantic involvement.
Conceptions of illness as private lead to avoiding disclosure.
For many people, facts and feelings about illness rank with sex
and finances for deserving privacy Maintaining this privacy
becomes part of a creditable self. Bonnie Presley remarked, "I'd
like to feel better before I have a relationship. I guess maybe I'm
not willing to share it." I asked, "Share it?" She said:
Share —
when I don't feel good share things like that. I'm not
willing —I mean I don't tell my daughter very often —
I don't tell
Disclosing Illness — 117
her. ... I know people who call and tell me real personal things
and I just think, "God, this person doesn't even know me and
you're telling me that?" I can't do that.
It's [feeling ill]; it's private; mine. In a relationship, you'd
it's
have to share. If somebody doesn't feel good and they don't

want to talk about it, then living alone seems like the answer.
You don't have to explain.
Should family, friends, and acquaintances think that the per-

son's illness, treatments, or symptoms are stigmatizing, they
may demand that he or she keep quiet about them. Thus, avoid-
ing disclosure naturally follows. Ill people, like this woman
who had bowel dysfunction, find "that I can talk about this
a
disease but that I can't find anyone to listen." Although she
spoke freely about her pain and sudden diarrhea to immediate
co-workers, they cut her off. She needed support and care from
her lover, but he could not tolerate the dirt and disorder her
condition caused and therefore he either ignored or castigated
her. As Mitteness (1987) points out, bodily control is a prerequi-
site to competent adult status. Thus, the lack of such control
goes beyond forcing disclosure; it threatens to elicit judgments
of inadequacy and incompetence. To the extent that others im-
pose their judgments and that ill people share them, they will
avoid both disclosures and situations in which their symptoms
might become apparent (Conrad 1987; Mitteness 1987; and Reif
1975).
Even without having symptoms that undermine bodily func-
tions, people often fear negative responses, revealed through
ill
direct statements, gestures, and tone. Usually after their first

serious episode, ill people will tell everyone all the details about
their illness, hospitalization, and doctor's advice. Although
initially interested,other people soon weary of these conversa-
tions and begin to treat the ill person as diminished, a malin-
gerer, or an object of fleeting pity. Occasionally, ill people's
friends and acquaintances told them that they looked "better"
but their tone and expression belied their statements. Not sur-
prisingly then, ill people prop themselves up for social occa-
sions with the help of their closest intimates. They try to present
a public face preserved from the past, only to collapse when
118 -« PROBLEMS IN EVERYDAY LIFE
they return home (Bury 1982). While still convalescing, an older

man with heart disease attended the office Christmas party. He
attempted to look as vigorous as possible. He rested for long
hours before, dressed nattily, rehearsed a ready repetoire of
jokes and quips, and minimized any overexertion in getting
there. Afterwards, he spent three days recovering from the
event. By preserving a public face, these people avoid or mini-
mize others' negative judgments that link their state of health
with their being. Preserving an earlier public face also protects a
current self-conception. To the extent that ill people preserve
that public face, they can more easily maintain the same feelings
about self.
By modifying certain disclosures, metering some disclosures,
and censoring still others, an individual can provide continuity
with a past self or protect a now fragile or vulnerable self. After
a turbulent first marriage that ended with her husband's death,
a young widow looked forward to a happy second marriage.
She asked her fiance if he could be happy with someone who
could not play tennis with him. She had a minor, but visible,
disability and high fatigue. Though her doctor had diagnosed
her as having multiple sclerosis, she vascillated between not
accepting the diagnosis and doubting it. To her, doubting the
accuracy of the diagnosis justified not telling her fiance about it.
She said, " 'cause I do wonder about this [having MS], you
know. I think the hardest thing is for me not knowing really
whether I have it or not, so I can't see whether I should, you
—
know, make things jeapardize things by saying that." By
avoiding this disclosure, she maintained continuity with a pre-
ferred self but risked later recriminations and feeling guilty
about deception.
Interaction with others may lead an ill person to censor disclo-
sure. For example, after a woman had snubbed Tina Reidel, she
then censored her disclosures. She recalled, "When she next
"
asked how my arthritis was, I said really quickly, 'Don't ask/
She reflected:
Some people I can bring in. Other people I have to keep

I feel
out. . . . When
they see me, it's as if they are thinking all these
other thoughts —
like, "should I go up to her?" or "what's she
9
Disclosing Illness 1 1
thinking?" They're thinking about me — I it up. But

can pick
they're not spontaneous. They don't just go,"Oh, hi, Tina," or
"Good to see you." Like that girl who knew me; I thought it was
very awkward for her to stand in front of me and talk to the other
person and not acknowledge me. So what it equates in my mind
is: Why should I bare my vulnerability to this person? They don't
even care.
Forms of Telling
Telling means relating thoughts, actions, or feelings with suf-

ficient clarity to be understandable. Telling usually includes
announcing and recounting professionals' accounts of one's ill-
ness and prognosis. Because disclosing represents a subjective
form of telling, the person's experiencing, feeling self is brought
into the foreground. Private views of self and personal dilem-
mas seldom made public in middle-class American life may
emerge.
I discovered two ways of disclosing: protective disclosing and
spontaneous disclosing. Protective disclosing is designed to
control how, what, when, and who people tell about their ill-
ness. They intend to protect others and themselves from shock,
anger, and fear about their illness and its future implications. In
addition, protective disclosing helps to reduce another's anger
or frustration about his or her unfulfilled expectations of the ill
person. When effective, protective disclosing controls the form
and timing of information, softens its potential harshness, and
buffers everyone's emotions about it. Since protective disclos-
ing typically necessitates planning, I describe it separately.
Spontaneous disclosing includes full expression of raw feel-
ings, open exposure of self, and minimal or no control over
how, when, where, what, and whom to tell (Schneider and
Conrad 1983). 2 People spontaneously disclose when they re-
ceive startingly bad news or perceive dramatic changes. Their
view of self does not reflect the self mirrored by illness. Soon
after relocating to another area, Joanne Dhakzak received a diag-
nosis of lymphoma. She called two old friends, "We're good
friends but we don't keep in that close contact. I remember
" I
calling them and it was like I was trying to acknowledge and

accept the fact that I did have this. ... It was like I had to tell
somebody and I had to have somebody tell me it was going to

be okay.
Occasionally, spontaneous disclosing accompanies good
news, such as when someone learns that he or she will receive
a kidney transplant. At that point, friends and acquaintances
might learn more about the individual's feelings about having
renal failure than they had during the entire length of the
illness.
More commonly, people with life-threatening illnesses pour
out their concerns and feelings when they first realize what
their diagnoses might mean, if they can talk about their illness
at all. When they do talk about it, their fear, sorrow, rage, or
self-pity may flood the interaction. Several people echoed this
remark: "I was babbling about it [her illness]." Later, they usu-
ally feel mortified for having dealt with the news in that way, at
that time, or to that person.
Illness, uncertain decline, and death can consume an ill per-
son's thoughts entirely. Subsequently, any hint or comment
reminding the person of illness calls forth more uncontrolled
revelations. Joanne Dhakzak recalled, "For the first couple of
years, it seemed like I'd tell everybody; it would just happen to
come up in a conversation and I always managed to get it in —
mean if it would work in logically, I'd manage to get it in. Not
with strangers, but the people at work."
Feelings about illness swell and resurface. Reconciling these
feelings becomes difficult when an ill person also views them as
no longer appropriate. After having had no recurrence for five
years, Joanne Dhakzak wanted to see herself as recovered. Yet
she felt that she dwelled too much on her illness. She viewed
her spontaneous disclosures as testimony to her unresolved
feelings about her illness and to her fear of recurrence: "Fd like
to be able to be in a group conversation and somebody men-
tions cancer, have me think to myself, 'yeah/ and then go on to
something else instead of going, 'Me too!' and on and on and
on. I want to be able to put it into proper perspective, or what I
feel is proper perspective, and pull it out when I want to, but
not have it just always spring out."
Disclosing Illness am 121
Spontaneous disclosing turns into self-exposure as an ill indi-

vidual reveals strong feelings and raises sticky questions about
self, significant others, and example, a forty-
situation. For
seven-year-old woman with multiple sclerosis raged against
her husband who had left her during her first debilitating epi-
sode three years before. She disclosed to anyone who would
listen, "My husband walked out during the first year I had this.
There I was lying in bed all the time and he up and leaves. He
didn't even last the first year of this and that wasn't the worst of
it either [her illness] —
I wasn't even in a chair then. He hasn't
sent me a cent; I haven't heard from him —

not one word. Not
even a card. Now what kind of a person would do that?"
When informing, in contrast, ill people assume an objective
stance, almost as if their bodies and their situations remain sepa-
rate from themselves. And, in fact, this objective stance reflects
some people's experience of illness. To them, threatening compli-
cations lie in a distant future, They apprise others of their
if at all.
health status and impart "facts" to them. They neither view
informing as risky, nor do they view themselves as discreditable
for having an illness. Often, they wish to tell people how to
minimize getting their illness, what having it is like, or how their
lives resemble everyone else's. For example, Heather Robbins
told everyone about having multiple sclerosis. She said offhand-
edly, "I'm a mother; I'm a wife; I'm a student; I also have MS." In
a later interview, she said, "I try to educate people about MS, that
it is not such a horrible disease."
Informing decreases emotional risks. Compared to disclos-

ing, informing permits greater control over emotions, over oth-
ers' responses, and over possible negative labels. For example,
her friend recalled how Helen Bartlett informed her about hav-
ing leukemia. The friend said, "Helen got very technical but
there was no crack in her voice. That's Helen. She doesn't even
give you a chance to think she's going to die" (Clark et al.
1985:69).
Through strategic announcing, ill people extend their control
over the information, themselves, and another's response.
They organize what they will tell, to whom they will tell it, and
when they will do it. Strategic announcing can protect self,
control interaction, and preserve power (Derlaga and Grzelak
1 22 — PROBLEMS IN EVERYDAY LIFE
1979; Goffman 1975; Schlenker 1980; Wilsnack 1980). Strategic

announcing takes a stronger cast than informing. Frequently,
people use these announcements to make declarations to
wider, more public audiences. Therefore, they must study and
shape ongoing interaction in order to be effective. For example,
Mark Reinertsen learned that he probably would lose his kid-
ney transplant. During a class discussion on quality of life, he
introduced the dilemma of being tied to a dialysis machine. He
announced, "Most of you don't know this, but I have a kidney
transplant and it looks like I am about to lose it. I'm not sure
that it's worth living if I have to go back on dialysis. And I'd
really like some input on that."
Because control and power are the very attributes chal-
lenged, diminished, or lost when one is ill, strategic announc-
ing can further attempts to maintain control and power. By
making an effective strategic announcement, an individual con-
trols and directs interaction, conflict, and outcome —
and at the
same time presents and protects self, or even creates an advan-
tage over someone else.
Repeated strategic announcements, artfully placed, offer pro-
tection from the demands, expectations, and assumptions of
others. Strategic announcements become necessary 1) when
illness remains unacknowledged, ignored, or minimized by oth-
ers, and 2) when illness requires someone to get help or to
reduce previous obligations. Invisible illnesses can necessitate
repeated strategic announcing to inform, enlighten, remind,
and instruct others.
Invisible illnesses, intermittent illnesses, or minor disabilities
can cause losses in strength, endurance, and function that only
a practiced eye might see. Subsequently, friends, family, and
co-workers discount the person's illness or fail to comprehend
how it affects him or her, even when "informed." The sister of a
woman with lupus erythematosus said, "We always thought
she was just a complainer." Disappointment, strain, and con-
frontation follow. "Why aren't you carrying your share of the
load?" "How come you don't just take the bus rather than
expecting me to drop you at the door?" "How come it takes you
so long to get dinner on the table? You've been here all day!"
Tina Reidel realized that her lover and his adult son, who
Disclosing Illness 123
lived next door, neither understood, nor even acknowledged,

her pain from rheumatoid arthritis. She strategically announced
her pain to teach them how it affected her and to alter their
perceptions of her actions. When walking past her lover's son
without stopping to chat, she said, "I'm in a lot of pain today/'
She intended to explain her abruptness and to instruct him not
to make demands on her. Because she felt that they hardly
acknowledged her illness, she made multiple announcements
about being interviewed for a research project on experiencing
chronic illness. For her, being interviewed meant objective vali-
dation of her claims to having a serious chronic illness.
Strategic announcing can boost self-presentation or display
self-importance. This happens when ill people announce signifi-
cant events surrounding past or present episodes of illness.
They retell these events to startle or to elicit concern from their
audience (Zurcher 1982). Vera Mueller explained, "Who else at
twenty-one years old had open heart surgery? It is one of those
little things that sets me off and makes me different. It's great. I
love it. 'Oh yeah, when I was 21, 1 had open heart surgery,' and
people go, 'Uhh, you're kidding.' Yeah, it's wonderful. It's an
it does great things."
ice-breaker at parties;
Such an announcement rivets others' attention and concern
and shapes the subsequent interaction and the emotional cli-
mate of the situation. The more dramatic the announcement,
the more attention and feeling it elicits. The ill person gains
—
sympathy, a sense of uniqueness, and sometimes desired or
not — pity.
Earlier crises can serve as identity badges to display when
potentially useful and, especially, to teach others of one's hid-
den value: "they [doctors and hospital staff] did all this for little
old me." Illness also provides gauges for measuring the quality
of relationships. A hospitalization, for example, provides a
gauge by which one can measure loyalty, devotion, and commit-
ment. Obviously, who shows and who helps during a hospital-
ization are ready measures. When Lin Bell had her second
angioplasty, her current date, Lotta, sat with her through the
night. Lin said, "And she had to go to work the next day. I'll
never forget that from her. I really appreciated that."
Strategic announcing, of course, is not limited to ill people.
Apparently, Lotta made her own announcement, which broke

up the relationship, but provided Lin Bell's physicians with
information. She recounted:
So then Dr. Howard was saying, "And you've quit smoking,"

and "Oh, Dr. Martin's so proud of you," blah, blah, and I'm
saying "Yes, yes." And Lotta's sitting there saying, "Lin, tell the
truth,you have to tell these doctors the truth," and I was think-
ing, "Oh, God, Fd like to bat you right in the mouth." And so
she takes little Dr. Howard outside the door and goes, "And she
is smoking, doctor."
How staff responds to an ill person can also stand as a useful

measure of their commitment. Lin Bell recalled Dr. Howard's
response: "He just looked at me — he's cute — he just looked at
me and said, 'Well, you know Dr. Martin and I are not going to
quit treating you, because a lot of doctors would quit 'cause
"
you're smoking.'
"wrong" images of self can emerge when some-
Certainly, the
one does the announcing. To teach the proper meanings of
else
self and illness effectively, one must also time strategic an-
nouncements well. By announcing either too early or too late,
an ill person may lose a strategic advantage. A middle-aged
man told his co-workers too early. They then scrutinized his
work for signs of slipping and hinted that he could be a drain
on them. By the time he actually needed their assistance several
years later, they had solidified their position against giving
help. Similarly, announcements lose their strategic effect when
they come too late. Other people already see the results of
illness and account for them in their dealings with the person.
Worse spontaneous responses can proclaim a rapid
yet, their
decline. "What happened to you?" "My God, how
the hell
you've aged!" These exclamations beg for explanations. By this
point, however, any announcement only eliminates rude ques-
tions, rather than providing strategic advantage.
Ill people make strategic announcements to control interac-
tion and expectations. As Tina Reidel mentioned, "I can use it

[illness] to put up as a block not to deal with someone I don't
particularly care for. I do use it, but it's like the illness, to me, is
Disclosing Illness hi 1 25
more important, mine, you know, than the relationship with

that person. I always think in my mind, 'Well, I don't care if I
"
ever see them again.'
people can also use strategic announcements to coerce
111
friends and family into doing something that they otherwise

would not do. Enlisting a partner to disclose can strengthen the
message. For example, with her homebound husband's ap-
proval, a woman called his son who was in arrears on a joint
loan. She announced to the son, "The doctor said that all this
stress he is having over the loan may kill him."
In this instance, as in others, strategic announcing can be
used to elicit guilt and responsibility. This stepmother believed
that her stepson ought to feel guilty about letting his father
down and about "causing" yet more serious symptoms. She
also wanted to nudge him to come through with the loan pay-
ment immediately. Sometimes an ill person tries to elicit guilt
and responsibility for less tangible reasons, like having good
health and not sharing his or her fate. By nurturing the seeds of
guilt, an ill person might also be able to build a foundation for
extracting later commitments for care. Using guilt effectively
relies on shared definitions of the situation, the relationship,
and the consequent "correct" behavior. Thus, from the start, an
ill person must strategically reaffirm his or her definitions.
Strategic announcements to elicit guilt can become a pattern.

A fear of decline and death spurs turning each episode into a
"crisis," which therefore justifies receiving help. When no help
is readily forthcoming, ill people may increase their strategic
announcements and appeals Whether real or con-
to guilt.
trived, repeated crises lead all but the most committed, or the
most manipulated, family members and friends to abandon
these ill people unless death is certain. Those who abandon
them decline the appeals to guilt and refuse to be taught.
How, when, and to whom ill people make strategic announce-
ments can serve as symbolic statements of others' relative posi-
tion, prestige, and priority. The meaning of these statements
intensifies when an ill individual holds considerable power
within a family or group. Whether young or middle-aged, chil-
dren, particularly, note their relative status when a parent
makes announcements.
announcing reflects motives and, moreover, rela-

Strategic
tionships. Over the years, secrets, alliances, and little conspira-
cies lend shape to relationships. The sparks of an earlier divorce
and remarriage often rekindle during illness and revive old
hurts and old alliances. Strategic announcing then fits into that
history and, likely, continues it.
Given such relationships, others might think that what the ill
person says is a strategic announcement even when he or she
meant it as a disclosure of information. In a troubled relation-
ship, for example, the ill person may delay disclosing because
he or she hesitates to introduce more problems into a continu-
ing saga of conflict. But others view the delay differently. They
might see it as a strategic ploy to keep them unaware and to
maintain power. To illustrate: when a middle-aged man's heart
condition worsened, he told his second wife and older son by
his first marriage, but he delayed telling his younger son. After
years of anger and conflict, he no longer knew how to talk with
this son. When his son learned that everyone else knew several
months before he did, he felt that his father had cheated him
again. To him, the delay symbolized his father's power and
testified to his low status in the family.
The logical extension of making strategic announcements is
flaunting illness. When people flaunt illness, they extend fur-
ther control over their audience and try to extract a specific
response, often shock or guilt, from them. These people use
their illness in a strategic performance, complete with acting,
timing, and staging. I was party to such a performance while
interviewing a middle-aged social worker about some of her
patients. When I arrived for the interview, she was seated be-
hind her desk; a bulky sweater, thrown over her shoulders,
covered her arms. She told me to take the seat directly in front
of her desk. Her left hand rested on the desk and her right hand
on her lap. After a few minutes of discussing the patients, she
announced that her husband had committed suicide on Christ-
mas Eve the year before. Then, she looked me in the eye,
smiled malevolently, lifted her right arm out from underneath
the sweater, placed it conspicuously on the desk, and waited
expectantly for my response. I ignored the fact that she had no
hand. She seemed surprised that I was not. I did feel that I had
Disclosing Illness » 127
ruined her show. The last scene had not gone according to cue;
the performance failed. At that point, she rather grumpily told
me that she had diabetes with complications.
At least during the performance, people who flaunt illness
seem to separate their present self, experience, and feelings
about illness from their portrayal of it. Thus, they objectify self
and illness and treat them as products that they manipulate for
audience effect.
Paradoxically, however, people may flaunt illness or disabil-
ity again and again because they feel immersed in it and angry
about it. Sometimes they resent everyone else because they feel
so diminished by illness and disability. If so, their feelings may
assume an objective, staged face as they flaunt their illness.
Plans for Disclosing
Developing a plan for disclosing allows an individual to protect

self, others, and relationships. Often, ill people do not intend
to avoid disclosing. But, they want to prepare themselves for it.

Their plans turn on what they disclose and how they disclose it.
Softening the news teaches others a tempered view of illness.
Like professionals, ill people soften the news by stressing the
positive, by glossing over any dark feelings, and by claiming an
active stance toward their treatment. Hence, they soften the
impact of their news by trying to balance it. Softening the news
to others can give ill people the strength to deal with it. These
disclosures indicate how people try to soften their news:
I have a chronic illness; I have MS, but my doctor thinks I'll
have a benign course.

The doctor says I had a heart attack; it had to be minor,
because I hardly felt anything.
I'm having another flare-up and have to go on prednisone,
but I know what to expect and it is a matter of riding it out.
Softening thenews alters the content of ill people's disclo-

sures. For
example, rather than giving her sister the full story,
Marty Gordon said, "I tiptoe around it; I don't tell her much."
Similarly, separating feelings from the news transforms disclos-

ing into informing. The content changes. Ill people leave out
their sorrow, anger, or remorse. By separating emotion from
information, they control how others perceive them, their infor-
mation, and, moreover, their emotions. As a woman with can-
cer stated, "I can tell somebody something very serious. I'm
pleasant, unflappable, funny, and in control. I can tell them
that I have fifteen positive lymph nodes. When I don't
. . .
pour out all this emotion, I feel more in control."

By managing her emotions, this same woman also managed
the meaning of her news and thus reduced its threat (cf Pearlin .
1989). Separating emotion from information gives respite from

and control over a flood of emotions, while minimizing the
chance of eliciting another's sorrow, shock, or pity. The subse-
quent strength that these people feel provides continuity with
their earlier selves. Occasionally, moreover, they may even dis-
cover that they have more strength than they thought they had.
In contrast to Hochschild's (1983) argument against suppress-
ing feelings, illness provides one context in which separating
emotion from interaction can have positive consequences. 3 Do-
ing so conserves energy and preserves consistency of self.
Structuring protective disclosures includes using the follow-
ing four strategies: 1) invoking the assistance of others, 2) set-
ting the stage, 3) providing progressive clues, and 4) selective
informing. Invoking the assistance of others buttresses both the
message and the scene. Assistants can then help keep the scene
together, if not the individual participants. Further, someone
else's presence usually reflects a unified view and a statement
of their shared relationship. For example, when a woman told
her former in-laws about her illness, she took her new husband
with her. A gay man took his lover, whom his parents hated,
with him when he told them about his cancer. Couples together
told their children because as Patricia Kennedy said, "This is a
family illness — it affects everyone."
Invoking the assistance of professionals, especially physi-
cians, makes the information real and legitimate to others.
Since her husband saw her as hypochondriacal, a woman with
heart disease wanted to ensure that he had exactly the same
information that she had. Unable to tell his wife about receiving
Disclosing Illness « 1 29
a grim prognosis, a man with lymphoma asked his physician to

doit.
A long, but undiagnosed, illness can lead to methodical plans
for disclosing the overdue diagnosis if family and friends have
long discounted an ill person as an authentic and reliable adult.
For example, a woman's doctors hospitalized her again for
symptoms that everyone, including herself, believed were psy-
chologically induced. When told that she had a bona fide ill-
ness, she took special care in telling her husband. For some
time, he had accused her of fabricating symptoms and had left
the relationship, but not the house, for another woman. Given
her strained marriage, this woman enlisted her specialist's aid
in disclosing to her husband. She wanted the specialist to un-
derscore the validity of her complaints. Simultaneously, she
hoped that having her husband acknowledge her symptoms as
legitimate might change his attitude toward her and establish a
new emotional climate in the household.
A supportive professional adds reassurance as well as reality
to the disclosure. Patricia Kennedy recalled, "The pediatrician
came down and said, 'and important for you to tell your
it's
children this, that you're not going to die and to reassure them
and to keep reassuring them.' So the pediatrician was very
helpful; he spoke with both the kids privately, and said he felt
they were okay, but it was just that we all needed time to get
used to it, not just me."
Certainly a doctor's office sets the stage for making announce-
ments. But ill people also can create a stage for imparting news.
They plan the "right" kind of setting and ambiance for easing a
relative or friend into the disclosure. Like physicians, they may
plan to tell the other person in a private place without interrup-
tion. These people usually plan to disclose directly, face to face,
so they can see the other person's response rather than making
a possibly disruptive phone call.
Concern with staging intensifies when ill people decide that

they must disclose everything at one time. They must disclose
before someone else does it —
either inadvertantly or intention-
—
ally and before physical changes become visible. A history of
misunderstandings or accumulated "wrongs" done to the
other person also prompts ill people to stage their disclosures
carefully. Handling the disclosure well helps to set the record

straight and shows respect for the other person. Thus, fre-
quently, ill people make more detailed plans for disclosing to
someone with whom they have had a conflicted, even distant,
relationship than to others for whom they have had much
more unreserved affection. For example, an older woman told
all the other members of her family of her recurrence of cancer
except one daughter. She said, "I want to tell Sally [her daugh-
ter] in the right way; I can't just call up and drop this one on
her. It's harder to tell Sally than the rest of the family because
there's been tension between us. So I've been thinking about
how I'll do it. She's so busy especially at this time of year. But
I think I should talk with her when we won't be interrupted.
I'll just invite her over for coffee and tell her when there are
just the two of us here."

Planning not only helped her control the disclosure, but also
protected the emotions each felt about it.
Providing progressive clues complements staging (Glaser
and Strauss 1965). Over time, the ill person gives hints, warn-
ings, and information to someone else. If the other individual
already knows about the illness without realizing its progres-
sion, the person builds on the seriousness of it. For example,
ill
a woman who finished chemotherapy mentioned, "I'm feeling

terrific since I got off the chemotherapy. All my tests are fine
and the doctors are really pleased. It's looking good. The
oncologist did say that it is possible to have micro-metastases
in cases like mine." By mentioning the possibility of micro-
metastases, she reminded her audience that her recovered
health may not be assured.
Long past, rather than present, crises, such as having had a
heart attack, pose other problems. Family and friends can for-
get or ignore these illnesses and their residual disabilities. Sub-
sequently, some people with invisible conditions toss remind-
ers to select others that they live with the nagging threat of
further illness. They wish to impart such messages as, "I may
not look sick, but I am sick," or "I live with the possibility of a
crisis developing anytime." Then, in the event of further or
sudden illness, family and friends are not caught by surprise.
Disclosing Illness « 131
Hence, these little disclosures define illness as still part of the
present and future, not simply the past.
Providing progressive clues often depends on selective in-
forming, which allows ill people to acknowledge certain as-
pects of their illness, but to minimize others, in order to protect
their friends, and often, themselves, as well. People use selec-
tive informing when they believe that others need to know
something about their illness, but not everything. They push
for an immediate doctor's appointment but do not reveal how
frightened they feel. They discuss symptoms but evade giving
suspected diagnoses. They disclose a diagnosis, but not the
prognosis. Later, they can offer more progressive, more serious
clues should they need to. In addition, if their condition sud-
denly worsens, others can make some sense of it. Marty Gor-
don recounted what she told her husband after her doctor's
appointment:
When I finally saw Dr. Ziegler he "We're in trouble with

said,
your hands; you have gangrene." guess I'd figured
I said, "I
that." [After the examination], Gary [her husband] said immedi-
ately, "What did he say about your hands?" "Oh, he said they'll
start clearing up." "Well, what did he say you should do?" "Well
nothing much." [To me]: I really kind of low-keyed that.
Selective informing achieves three other major purposes.

First, it allows ill people to preserve the earlier structure of the
relationship, and subsequently maintain their autonomy and
independence. Thus, an elderly woman tells her daughter, who
lives in another state, about her hospitalization not about her —
occasional falls and dizzy spells. This woman avoids a family
crisis about whether she should live alone and maintains her
relationship with her daughter as it had been in the past.
Second, selective informing enables ill people to believe
that they ease another person's strain. Their decisions about
what, when, and how to disclose turn on their assessments of
this individual's life. For example, Bessie Thompkins told her
daughter, Elsie, about the tests her doctor had scheduled but
decided not to tell her about her increasing chest pains, despite
I
132 ib PROBLEMS IN EVERYDAY LIFE
describing Elsie as her "best friend/' Elsie had three teen-agers

still at home, a grandson to babysit, and a husband who had
just had a triple bypass operation. Bessie

said, "Walter [her son-
in-law] isn't handling very well either. And Elsie's already got
it
so much to do. My daughter's got two babies to take care of so

she doesn't need me telling her things that will just make her
worry more."
Third, selective informing sets the stage for later concern or
assistance without overusing them prematurely. Single and
older people often struggled to maintain their independence
long after their physicians told them that they should not live
alone. For example, a single, middle-aged woman selectively
disclosed information to her only relative, a brother, with
whom she had shared a cordial, though not close, relationship.
She had occasionally socialized with her brother and his family,
but neither she nor her brother had ever relied on each other.
Their lives had taken different paths, his with his business and
family, hers with her secretarial job and a small circle of friends.
She felt that she should not expect much present or future help
from him. Moving in with them would affect his family, espe-
cially since the youngest boy would have to give up his bed-
room. Her past relationship with the family, and the amount of
disability she had already experienced, influenced her decision
to carefully meter information to them. Hence, she tried to
preserve their past relationship without burdening them with
her presence or with future obligations.
Selective informing can strain relationships, however, when
the provided information insufficiently accounts for an ill indi-
vidual's behavior. Bonnie Presley had told her twenty-two-
year-old daughter little about how lupus erythematosus had
affected her life. Upon returning home to live with her again
after five years, her daughter confronted her about her limited
activities. Bonnie explained:
Last Friday a week ago, we just really had words. She finally —
don't know what happened; I don't know what started it. She
said, "Mommy, I just can't take this anymore; you never go any-
where; you never do anything; you know, you're just staying
—
home all the time and " I said, "Hey, this is all I can do, you
Disclosing Illness m 133
know. I'm trying to better myself, and I'm reading but I don't
have the energy that you remember." 'Cause see, when she left
—
me left me, went away; I hadn't seen her for a couple years, I
—
was working out, working full time she used to call me the
bionic woman. . Then when I explained it to her, everything's
. .
been real good. She said, "Why didn't you tell me?"
6
Living with Chronic Illness
I've gone through twelve weeks of cardiac rehabilitation and they gave
me a daily chart that I'm supposed to continue. I'm supposed to do back
exercises and the cardiac exercises and then I'm supposed to walk
. . .
for thirty to forty-five minutes each day. When I do, sometimes I might
walk for an hour but I haven't done it this last week it was hot to —
begin with and I didn't go out and I didn't exercise and then I've been
having so much trouble with my back, and I get dizzy when I lay down
on the floor [to exercise].
I was frustrated for so long with the asthma, not being able to do
things and then the bowel problem came along. What it does to . . .
your nerves [laughs ruefully] is terrible.

If we are going anywhere like on a hike, and we leave early the next day
so the night before, I'll take four or five pills for the bowel so I don't have
to have a bowel [movement] and then I just don't eat anything after 6:00
and then I am real careful about what I eat so that I can plan ahead to do
this thing. So it gets hard. . . . You have to stop and think before you
make something —you've got to put a little more time into it.
From embarrassment From discomfort to

to mortification.
pain. Endless uncertainty. Regimentation. Ann
What follows?
Rorty, a fifty-four-year-old woman, spent
her days minimizing
pain and avoiding humiliation. Planning, scheduling, and tim-
ing absorbed her thoughts. Frustration and anxiety resulted
when her efforts failed. Ann found herself in midlife with
asthma, chronic back pain, bowel incontinence and, most re-
cently, heart disease. Her varied conditions with their respective
regimens contradicted each other. If she followed her surgeon's
advice to treat her back pain with bed rest, she interrupted her
134
Living with Chronic Illness warn 135
cardiac exercise regimen. If she ate a healthy diet for her heart,
she caused havoc with her intestine. If she could return to work,
her morale would improve but her back pain would worsen
since she could not stand or sit for long.
How do people like Ann Rorty handle daily life? What can
people with multiple chronic conditions do to preserve and
continue their independence? How do they plan to avoid em-
barrassment and humiliation? What is it like to follow stringent
diets, rigid schedules, and unusual treatments? How, if at all,
do ill people create and handle strange new routines?
In Chapter 3, I discussed keeping illness contained as a
strategy to maintain continuity of self. In this chapter, I show
how living with illness merges with strategies to keep illness
contained.
Contexts of Life
Living with chronic illness occurs within social and personal

contexts including the structure of medical care. As a result, the
problems of living with on ill people and by
illness fall squarely
and friends (Conrad 1985; Corbin and
extension, their families
Strauss 1988; Gerhardt and Brieskorn-Zinke 1986; Locker 1983;
Schneider and Conrad 1983; Strauss et al. 1984). As a logical
consequence of fragmentation within the medical care system,
people commonly handle illness in individualistic, idiosyncratic
ways, frequently in isolation and with little information. 1 As a
result, ill people become innovators in handling their illnesses,
inventors of their lives, and creators of ways of coping. Not
surprisingly, some
of their inventions remain taken for granted
and unnoted. Furthermore, they do not think of other possibili-
tiesor realize when they might have choices. Rather, their in-
ventions and adaptations flow together in what eventually feels
natural.
Living with chronic illness occurs within a context that in-
cludes age, class, gender, occupation, marital status, and type
and extent of disability. Age and class affect whether someone's
inventions remain taken-for-granted adaptations or explicit
136 hi PROBLEMS IN EVERYDAY LIFE
strategies. Very old people, especially working- and lower-

middle-class elders, likely have long been disconnected from
community and society. They adjust and adapt to their plights.
Younger individuals, especially well-educated professionals,
— —
chafe at such disconnection or the threat of it and often de-
vise elaborate strategies to preserve their pursuits and their
lives.
Strategies for living with illness change as it progresses.
Someone who hid illness later acknowledges it. Someone who
once juggled regimens and treatments to conceal illness at
work later retires and just keeps it contained during social
events. People may abandon elaborate strategies in favor of
more simple ones.
Learning to live with illness develops as people form and
collect strategies to get through the day and revise them as their
conditions change (Jobling 1977; 1988). Their efforts spur ques-
tions about the logistics of scheduling, pacing, and handling
spatial arrangements. They must take into account the need to
follow regimens and control symptoms, as well as all the other
logistics of living— caring for children, being sexual, doing
housework, cooking, shopping, and keeping a physically or
psychologically stressful job.
Many people attend to their illness when it prevents them
from remaking their lives or when it immediately impinges
upon them. If living with illness and following valued pursuits
do not complement each other, people put their pursuits first.
Throughout each day, they sacrifice their health in small ways.
For example, Heather Robbins was determined to raise her
children herself. As a result, she lifted and carried them. She
said, "My legs still aren't that strong. And I use my back to lift
rather than my legs to lift and it hurts."
Living with illness raises the question: which illness? Chroni-
cally ill people often devote their efforts to the most intrusive
ailment and minimize a less noticeable one. The possibility of
bowel incontinence structured Ann Rorty's daily routine. By
remaining at home until the afternoon, she could better discern
if she could risk leaving the house at all. Unlike some people,
Ann could talk about controlling incontinence. Her heart condi-

Living with Chronic Illness m 137
tion, however, seemed more ambiguous and the consequences
of ignoring it more intangible. She commented, "I can't get the
heart problem out there where I can deal with it and talk with
it, about it, because I don't know what it's going to do or,
everything that, you know, surrounds it. I know what diets and
the exercise you should do and shouldn't do but like, it's not
cut and dry."
For her, living with illness meant predicting her limits of
medical noncompliance without causing herself harm. She had
to know the size of the container and how it could be wrapped
before she could keep her heart condition contained.
Very ill people must learn to plan the minutiae of their lives,
if they are to remain independent. A woman with multiple
sclerosis found that if things were slightly out of place, she

could not manage them. If her sweater was in the bottom
dresser drawer instead of the second drawer, she usually lost
her balance and fell while trying to pull the drawer open. If the
vacuum in the hall closet got caught on the carpet edge while
being wheeled out, she could not lift it over the carpet. If the
trash got too full or heavy, she might drop it while carrying it
out.
Inability to handle routine tasks evokes existential dilemmas
about self- worth, living at all, and limitation. Dropping the
trash takes on magnified meaning. To the person, it means
ill
more than miscalculation or clumsiness. It symbolizes a dimin-

ished self. Tremendous frustration, anger, and despair result.
Consequently, many ill people organize their lives to reduce the
number and intensity of such existential glimpses of self and
the feelings they invoke.
Changes in people's lives bring different needs. For example,
nine years ago, Patricia Kennedy wrestled with the logistics of
handling her regimen, doing housework, and chauffering her
boys all over the county. Grown children and new goals
changed what she needed to do. Her plans to return to work
coincided with her oldest son learning to drive. He took over
most of the errands. His help allowed her time to work and to
rest. Having help provided a buffer for her self-concept and
self-esteem.
Remaking a Life
The problems with which people struggle are existential;

ill
their solutions are often organizational. 2 To remake a life, they

need to focus and organize their efforts. They attempt to take
control of their lives by organizing time, space, themselves, and
other individuals. They ask such questions as: "How can I get
through the workday?" "How can I save energy?" "What can I
cut out?" Remaking a life includes planning, tightening, and
modifying or reorganizing tasks and activities.
Being aware of one's efforts to organize turns on: 1) defining
sharp contrasts between before and after the illness, 2) having
always noted such efforts, 3) puzzling over how to make inno-
vations, and 4) seeing one's independence threatened. A man
who had had a heart attack explained, "I had to change my life;
otherwise I wouldn't live."
Of course, an ill person can find it useful to have a set of
needs and tasks that must take priority. A middle-aged man
said of his regimen of diet, exercise, and rest: "It's my excuse to
pamper myself and to put myself first. I've got something now
that I have to insist on selflessly. It's not my mind; it's my
body."
Not uncommonly, ill individuals organize their activities care-
fully and methodically without full awareness of why they
make certain plans and choices. A woman with cancer wore a
cap, which did not cover her hair loss. She did not realize that
she tried to avoid embarrassment until she read an earlier draft
of this material. She said, "I get out before people are in the
streets and walk my dog early in the morning and at dusk
because I'm shy about losing my hair."
When someone has always tightly organized activities, sched-
ules, and tasks, illness presents yet another realm of life to plan
and manage. Patricia Kennedy commented, "I've always been
—
an organizer that's how I've gotten things done. I like an
orderly life; I like to know what I'm doing and when I need to
do it." Once she ordered her life for efficiency and productivity.
As her illness progressed, she aimed to limit fatigue, suppress
—
Living with Chronic Illness an 139
embarrassing symptoms, such as an unsteady gait, and avoid

stares and questions. She managed her time and pursuits to
preserve a valued self.
Managing a regimen for years, such as a cardiac diet and
exercise program, results in it becoming part of daily routine
(Davis 1963; Kelleher 1988). A young physician with diabetes
did not see himself as attending much to his illness. However,
he had perfectly synchronized his busy schedule to fit his ill-
ness and regimen and to keep them hidden, although he did
not dwell on illness per se. He planned his daily schedule to
allow for rest periods, meals, and exercise. Further, he ar-
ranged to take his insulin just before or after work and dates.
Yet, not until he recounted his regimen did he realize how he
had organized it. In contrast, when people's efforts feel bizarre
or when they are plagued by continual reminders that they
cannot do things the way others do, they know precisely what
they organize, why they do it, and how they do it.
Constantly coping with a steadily progressive illness or suffer-
ing from an unpredictable condition poses enormous existential
and organizational problems. The need for continual reorgan-
izing can drain and discourage ill people. An elderly woman
noted, "Just when you think you've got things planned and
—
manageable wham another complication, more disturbing
symptoms and you're back to where you started again."
Organizing tasks can extend through an entire household.
Married men draw upon the assistance of their wives. Women
often must enlist the aid of children and husbands or compan-
ions. A middle-aged woman served as coordinator and overseer
of household tasks, but executed none of them. She shifted the
burden to her five daughters who took over the housework and
to her husband who added the yardwork to his home mainte-
nance duties. Involving other family members enabled this
woman to continue to work. Another woman could not do
housework because multiple sclerosis had left her arms too
weak beyond her wheelchair. Despite her failing eye-
to reach
sight, she could locate everything in the household (Charmaz
1987). She saw herself as the family organizer since everyone
depended on her:
"
I am organized — got it from my mother, there is a place for every-

thing, a time to do it, a place to wear everything. ...
I keep track
of everything that needed even though my husband does the

is
shopping. I have my desk and keep all the appointments for the
children and organize what Mrs. Roberts [her housekeeper]
should do each day. [She laughed.] My husband says this place
would be chaos if I didn't keep everything straight. (Charmaz
1987:312)
Taking on the role of household organizer reduced this wo-

man's feelings of guilt about "otherwise being a drain on the
family.
frequently, ill women organized some tasks for others
More
to do but continued to do most of the housework themselves.
For example, mothers of teen-agers enlisted them to drive and
load the car but still cooked and cleaned. Heather Robbins's
first serious flare-up of multiple sclerosis occurred when she
was a single mother of her Tammy. Though she felt
little girl,
that she had expected too much from the child, she had discov-
ered that Tammy could help. She said, "She was getting herself
dressed at eighteen months. She knew how to open the
. . .
refrigerator; she got yogurt and food to eat. She would help
carry things up the stairs and she was just a baby."
Women, as well as their families, commonly believed that
they had to function as before. Several mothers, however,
found that allowing time for rest and regimen meant abandon-
ing the "supermom" role. Subsequently, the entire household
needed reorganizing. That meant relying upon children and
husbands to do unfamiliar tasks. Patricia Kennedy had to teach
her son what dust looked like. She said, "I would take him over
to a table and point to it and say, 'what's that on the table?'; he
would look at it and blink, 'Nothing.' Now he knows what dust
looks like and I don't even have to ask him to do the dusting; he
just pitches in and it's not a big deal."
Women taught husbands and children how to do the laun-
dry, make beds, and plan meals. Spouses and children who had
already been involved extended the kinds of work that they had
been doing. A woman who had diabetes had always shared
household tasks with her husband. Her life-threatening insulin
Living with Chronic Illness n 1 41
crisis caused him to extend his involvement to organizing and

monitoring her care.
Similarly, men also organized tasks but then delegated them
to other family members, such as driving, managing business
accounts, and maintaining the car. Their efforts allowed them
to feel that family life remained under control, even if they
could not do the tasks themselves.
Single adults enlisted their parents and siblings in the work.
A young woman's sore, stiff joints made getting into clothes a
time-consuming daily trauma. She asked her mother to adapt
her clothes to her changing body. A sister did grocery shopping
and errands for her ill brother. A few single people had rela-
tives who sensed when to help. Gloria Krause's divorced
mother came to live with her when she got sicker. Her father
and his wife sent money and provided help during their visits.
Yet, family and friends may limit their involvement. Some
relatives volunteered to organize help but would not give it,
which commonly happened to single elders. Other relatives

and friends helped but placed time limits on what they could
do. For example, a middle-aged woman's husband helped occa-
sionally with the housework. But they both agreed that keeping
up with his business and graduate program came first. Several
spouses took over household tasks and childcare but expected
their partners to keep working, despite serious illness.
Before becoming ill, many people had not thought about
organizing their day. Afterwards, they found it a consuming
interest. Immersion in illness makes completing the most basic
self-care a major hurdle. As Sara Shaw recalled, "My energy
was incredibly low, so I would really organize it [self-care] out
[while in bed]. I would have every single little thing down that
I needed to do. I would go from one [thing] to the other. Then
when I would get up to do it, I wouldn't have to think about

it. I would have it organized. I would do exactly what I
needed to do then I would be back in bed as soon as the

energy went down."
Like others, Sara learned to organize through being ill. She
said, "I'm really good about effective use of time now. I learned
a lot about that when I was ill. You can just have time go
. . .
along and be spread out all over the place and not get the
—
1 42 -a PROBLEMS IN EVERYDAY LIFE
things done that are really important. So what's important for

me to do at this time? That was learned, conditioned while I
was sick."
Another young woman thought through exactly what she
would need to do in order to create a life for herself. Before her
illness, she had lived spontaneously, following intuition and
whim. She described herself as having been someone who
would travel three thousand miles on a moment's notice with-
out taking a coat or money. Afterwards, she planned her life
from developing stable friendships to solidifying her finances
—
and choosing a favorable climate before she reentered a uni-
versity. She said, "The first year I was trying to decide just what
I wanted to do. The second two years I was saving money and
actually making up little shoe repair kits. I just organized my

—
whole life my files. Instead of having things all over, I had a
shoe repair care kit, a box with ribbons and papers, plant care
kit, every single thing in my life is organized."
This woman not only reorganized her belongings for accessi-
bility and convenience, she organized a life that would aid her
in reaching her goals. In that way, she improved her chances of
living on her own terms. Moreover, she planned a foundation
on which she could build a valued self.
Illness also can prompt the further development of organiza-
tional skills. An older woman with lupus knew that she could
not handle the rigors of an office job. Like many lupus patients,
she also shielded herself from the sun. By creating her own
business and working at home, she avoided the relentless sun
in her hot valley town and paced her day so that she could take
rest periods. By working in a darkened room, she protected her
health and, moreover, organized a manageable job.
Learning effective organization depends upon fitting activi-
ties between hopes and plans. This often means scaling down
hopes and former expectations of self and planning around
disability. Even though psychologist Ernest A. Hirsch's disabil-
ity benefit provided a comfortable income, he continued to
work without pay, since work structured his life. He observes,
"Coming to work every day gives a certain body to my life and
prevents it from flowing away in a formless puddle. Work gives
me something to look forward to and to look backward on, a
—
Living with Chronic Illness 143
tomorrow, a now and a yesterday that organizes and shapes"

(1977:134).
Reconciling hopes and plans affects the organization of each
day. Being supermom had structured Patricia Kennedy's self-
concept and daily life. However, having multiple sclerosis
forced her to plan around her disability. She anticipated the
amount of activity that she could handle and realized that do-
ing more accelerated her fatigue and discomfort. "I always pre-
pare for evening activities. I always take a two-hour nap in the
afternoon, even if I'm not tired."
Making Tradeoffs
When ill people try to organize their lives, they weigh and
measure what they can do and the importance of doing it; they
make trade-offs. 3 Their choices, tacit adaptations, and unwit-
ting changes reveal their trade-offs. Which trade-offs do they
make, and how do they do they make them? They simplify
their lives, reorder their time, and juggle and pace their activi-
ties to fit their lives.
Simplifying Life
Simplifying means eliminating some events, activities, and

tasks entirely, and reducing the steps, obstacles, complexities,
and necessary time and space of others. Although simplifying
reduces effort and stress, the costs come in the trade-offs
forced trade-offs. Ill people assess their physical stamina and
survey their daily tasks. "What can I give up?" "How can I
make things easier?"
Simplifying preserves the most necessary activities by mak-
ing them easier. Including others in a task simplifies it and
simultaneously maintains the social relationship. Patricia Ken-
nedy said, "With David's [her husband] schedule, I don't plan
things like real elaborate meals during the week because I never
know when he is going to leave the office. So rather than put-
ting an additional stress on me, I don't start to cook until he
comes. We cook together; it is a good time for us you know, we

can talk, catch up on what's happened during the day. It's a real
good time and I wonder why we didn't do this all along."
Here, Patricia Kennedy gained doubly, for she shared social
space as well as the task. Similarly, Heather Robbins lay down
when she nursed her baby so that she could rest a bit. Simplify-
ing tasks allows the person to continue to do them, and at the
same time also saves energy for other pursuits. Carolyn Hard-
esty writes, "My dearest aunt sent me an electric can opener
since I could not grip the handles of a manual one with enough
force to puncture a lid. We switched from cloth to paper diapers
because I couldn't open or shut a safety pin. ... I made a rare
visit to a hair salon for a permanent so my hair would take care
of itself after a quick shampoo in the shower (this I could do
only be easing my arms up, never elbows out)" (1987:21).
Added responsibilities blur simplifying for illness. For ex-
ample, having a child or getting a full-time job force most par-
ents to reorganize their lives and to simplify some tasks. After
her second child was born, Heather Robbins occupied her tod-
dler with television programs to give herself some respite. She
also discovered that having another baby legitimated simplify-
ing her social involvements:
It'seasy for me to say, "I have a baby; I don't have to do this" if —

—
somebody's planning a lot of something that takes a lot of walk-
ing, hiking, or something that maybe I just can't do. We'll go . . .
places that we know we can take it easy. I can lay down with him
[baby]. Where she run around and play and do
[toddler] can
things like that, but don't have to be running around like a
I
chicken with my head cut off planning a lot of things. We don't

have a lot of dinner parties, not that we had that many anyway. I
mean we had company over like twice a week; they were like hot
rods and we just don't do it anymore. It's easier not to.
Changes, compromises, and sacrifices permit ill people to

carry on a life, albeit a simplified one (cf. Reif 1975). That's the
A middle-aged single woman read novels she didn't
trade-off.
likebecause she could still get to the supermarket where she
bought them. She traded reading bad novels for risking the
Living with Chronic Illness m 145
embarrassment of asking someone to go to the library for her.
Elderly people ate TV dinners rather than prepare meals. Many
people who did cook fixed enough food for several days or a
week. They traded variety for convenience. Christine Danforth
kept her job and her bowling league's records, and simplified
everything else. She said, "As it is now, I wash the dishes once
a week; I rinse them and throw them on the counter and then,
just wash them [later]; it's easier."
When possible, other people trade expense for services. Af-

ter he inherited money, Mark Reinertsen eliminated cooking
by eating one hot meal at a restaurant each day Chronically ill
elders, who lived alone but had financial resources, hired help
for tasks they used to do themselves. (Similarly, working
people buy services and thereby gain time for work or rest.)
After several years of living marginally, Bonnie Presley started
an accounting business. She remarked, "I have a housekeeper
now and I have my nails done every week. I don't do my
ironing; I don't clean my house. She does the laundry; I do
my personal laundry, but she does all the other laundry. And I
really can't afford it but I do it anyway. Because there's no way
I can go work all day and come home and clean and stuff. So I
made that choice too. And the business is just going to have to
pay for it."
Occasionally, people will simplify their homes by ridding
them and accumulated rem-
of extra furniture, knick-knacks,
nants of the past. They close off unneeded rooms, move their
bedroom downstairs, or add a bathroom. This allows them to
move about with greater efficiency, control, and, often, safety.
Other people rid themselves of their homes. A middle-aged
divorced woman with heart disease sold her home and rented
an apartment, which she shared with her nearly blind aged
mother. She traded privacy for efficiency and for closer monitor-
ing of her mother's health. She thereby eliminated yardwork,
reduced housework, and streamlined her daily schedule. Previ-
ously she had cleaned, cooked, and cared for her mother in
addition to managing her own health and household.
People develop different ways to simplify their lives. Few
people can remodel their homes. Not everyone thinks of using
space in new or easier ways. But many people revise their
standard of living downward. John Garston said, "I don't have

to exert myself all that much and am able to maintain some-
thing [do enough work] where I eat. It is, you know, a low
standard of living."
Standards of cleanliness and housekeeping also slide down-
ward. Vera Mueller remarked, "My house has never been
clean. I never have had the physical stamina to do everything.
And the minute one thing gets clean, something else gets
dirty."
Not surprisingly, the trade-offs in housekeeping prey more
on women's minds than on men's. Tina Reidel kept her job,
followed her spiritual path, and took time for herself. But she
did not clean the house, which she saw as one of her "deficien-
cies." She added:
And then the house, I think I feel all stressed out when I come
—
home, 'cause it's such a you know, I'm a pack rat and it's a
mess and then I get all stressed out when I come home, 'cause
the house looks like some part of my pysche that I don't want to
deal with. Like it's chaos and all the beautiful things in the
—
house like in my room are strewn all over the place. I don't
want to deal with them. The physical is like sort of tearing at me
and I don't want to spend my physical energy to fix up the
house. Like whenever I have some energy, I want to spend it on
myself [giggles]. It's like I'm so limited. 'Cause I'm always trying
to do stuff for the self. ... So it's almost like to balance all that
stuff [being in pain].
If no one else can or will do household tasks, they remain

undone. Unkept houses lead to embarrassment and simplify-
ing further by eliminating visitors. A single woman took much
pride in remaining independent but couldn't bear to have
guests. She remarked, "I'm independent but my cottage is a
wreck."
Gradual erosion of prior standards of household or personal
cleanliness usually occurs imperceptibly. When depressed, iso-
lated, and ill, people's standards of cleanliness fade. Also, some
older people can not see the dirt and cobwebs. An elderly hus-
band's illness had become both preoccupation and occupation
Living with Chronic Illness 147
for him and his wife. After her unexpected death, he seemed
unaware of grime and clutter. He simplified unwittingly. He did
almost as little as he had before her death and began to drink
heavily. Certainly grief, loneliness, depression, and disorienta-
tion can contribute to such responses, whether from disloca-
tion, disconnection, drug interactions, or drunkeness.
People not only simplify self-care and household tasks, they
also simplify hobbies. That way they can still follow valued
pusuits. Nancy Swenson stated:
I'm not going to quit on the garden; I'm just going to make it
smaller. .I'm going to simplify it and experiment and I think

. .
it's going to be kind of neat, because I'm going to make planter
boxes with wire under it to keep the gophers out and I'm only
going to have certain things. You know, just enough for the
family and make more variety. And something so it won't be a lot
of work. ... I think people need, when they're ill, to do some-
thing that's rewarding, to make them feel good about them-
selves. Look at this tomato, I mean I was proud
. . . — I mean I
had some beautiful tomatoes. And I think you need that. You
need some free self-esteem.
As health decreases, self-care takes precedence and activities

shrink to a bare minimum (Fagerhaugh 1975). Hence, ill people
will trade efficiency for being able to function at all. A middle-
aged woman shopped at an expensive neighborhood market
because she could park in front of the door and purchase basic
supplies by making one round through the small store. But she
couldn't get any other errands done simultaneously. If she
shopped at the supermarket, however, she could also buy
household items, refill prescriptions, and go to the post office.
When she went to the neighborhood store, she lost efficiency
because she had to do more time-consuming errands later; but
in another sense, she gained it by avoiding exhaustion.
Performing one major task a day helped many ill people to
manage their care. For example, to simplify his day and to
preserve his energy, a retired man scheduled no more than one
main event in a day, such as a doctor's appointment. A woman
commented, "I try to do one hard thing each day I grocery —
shop one day, cook another, and do the laundry another so that
I don't get so exhausted."
Most people think about ways to simplify certain tiring
tasks — such as shopping, cooking, and cleaning. Elderly people
often shopped when the stores first opened because of light
traffic, empty aisles, and short lines. A streamlined route with-
out delays simplified their task (Fagerhaugh 1975). Determining
the quickest and most convenient way to complete a task helped
cut steps. Nancy Swenson said:
I find cooking real easy; I've learned a lot of tricks since I've been
ill. . . . And
what of I do is is I cook a large amount of
a lot of —
some things and then freeze [portions]. Well, from start to
. . .
finish, I can have a healthy meal on the table in half an hour. . . .
I'll take a pot roast and I'll cook it in the crockpot with potatoes
and carrots and that's a meal. Well then what's left of the pot
roast ... I put back in the crockpot and add maybe a can of . . .
chili con carne and mix this up, and get some flour tortillas
. . .
and cut up some tomatoes and just heat up a tortilla at a

. . .
time. ... So [next] I make a beef soup out of it [the remaining

leftovers] with the stock and the gravy. I thin it down and then I
just start adding all kinds of vegetables and maybe a little
pasta. And then I'll get a loaf of French bread and we've got
. . .
our meat and our vegetables and a healthy meal there. . . .
—
So I find cooking cooking is just a snap, you know. You
just —
I guess you learn these things when you're sick and you
don't feel good. You learn these little shortcuts. I remember enter-
taining and preparing so far ahead and working so hard and
now, you know, I can put things together and they're just as
healthy and just as good, and sometimes even better in just no

time at all.
Simplified self-care that begins in the aftermath of a crisis can

last far longer than ill people had anticipated. Financial and
physical strain can make it necessary to continue a "temporary"
adaptation. For example, a middle-aged woman who had
prided herself on her fastidious appearance had to relinquish
her grooming due to a medical crisis. Later, she had no choice.
She could not apply her makeup neatly; nor could she afford
the costs of dry cleaning and hair coloring. She had to accept as
Living with Chronic Illness » 149
permanent what had been temporary measures during a diffi-
cult period. Her range of possible trade-offs narrowed consider-
ably. For her, a temporary present became a permanent future.
Staying home is a major strategy for managing illness (Locker
1983). Why leave the house at all if going anywhere is so diffi-
cult? Leaving the house means work. Planning uncongested
routes. Arranging rides. Getting help. Packing supplies. Organ-
izing medications. Ironing a shirt or dress. Added to the work
are all the "what if's?": "What if my bladder leaks?" "What if
they don't serve anything I can eat?" "What if my hand starts to

shake during dinner?" "What if I get into trouble in public?"
By staying home, ill people can jettison both public self-
presentation and the preparation that it entails. By shrinking
space, they expand units of time. Moreover, poor people as well
as those who cannot drive are forced to stay home. John
Garston said, "I literally don't leave here. I garden and eat out of
my garden. . I'm stuck here." An elderly woman who suf-
. .
fered from urinary incontinence said, "I don't leave the house
anymore; it is just easier than taking all that paraphernalia and
risking being mortified anyway. It is just too embarrassing." As
a result of her illness, Patricia Kennedy had reorganized her
home. She remarked, "Home is a real safe environment because
I have it set up so that everything is convenient. It is a very safe
place and leaving it is scary."

A simplified life home feels safe due to its familiarity and
at
predictability. Staying home means less anxiety and distress,
and therefore fewer existential confrontations. Nonetheless,
even if one remains at home, the existential questions of mean-
ing, purpose, and productivity in life can persist and increase.
Tacitly or even explicitly, ill people sometimes simplify tasks
as a trade-off for maintaining significant relationships. They
may abbreviate their self-care, or strip their homes of clutter, for
the benefit of their caregivers. For example, an elderly woman
reluctantly agreed to stop wearing underpants since they
caused her husband so much difficulty when he helped her on
and off the toilet.
Quite clearly, determining when, how, for whom, and for
which purposes to simplify can cause conflicts in families. Such
trade-offs are hard won. Conflicts over trade-offs escalate when
participants' self-concepts, rather than mere logistics, are at is-

sue, however tacitly that occurs. To several men, accepting hos-
pital beds, commodes, or disposable pads symbolized greater
dependence and debility than their self-concepts allowed. They
tried to maintain their former dominant roles in the household
and to mask their growing physical dependence by barking
orders to their wives. They felt that using the equipment com-
promised their authority and proclaimed frailty and loss.
Caregivers' self-concepts also get caught up in strategies for
simplification. What may simplify life for the ill one may mean
more work for the caregiver. An elderly woman carefully sched-
uled only one errand a day, but her daughter had to organize
and do that errand. The daughter said, "I have to drive ten
miles in heavy traffic to do one thing."
Ill people often simplify by getting or letting someone else do
the work or provide the care. Pressures to do so may become

overwhelming. The trade-off may be implicit, like being al-
lowed to continue living in one's own apartment. An elderly
man refused to use disposable pads for his growing urinary
incontinence, which resulted in stacks of laundry and soiled
floors. He relented about having his home health worker help
him after the visiting nurse insisted that he wear the pads and
his daughter threatened to put them on him herself. His nurse
and daughter overruled him; they discounted his wishes for
modesty in favor of simplifying what had resulted in arduous,
unpleasant work.
As a simplified routine grows familiar, it seems normal to the
ill person but perhaps bizarre to others. Thus, isolated and de-
pressed ill people "normalize" wearing dirty clothes, living in

pajamas, and bathing infrequently (Wiener 1975). 4 In addition,
over time, other people normalize seemingly strange simplified
routines that help them to function. For example, having atten-
dant care simplified Ernest A. Hirsch's day and allowed him to
continue to work:
It's interesting, in fact, how many things are adapted to, things,
which at first may seem altogether strange. One of these changes,
which I viewed with dread before I actually undertook it, turned
out to be quite easily adapted to. This activity involved having
Living with Chronic Illness bm 151
myself washed, combed, shaved, and so on, rather than doing it

myself as I had done practically all my life. but since I returned
. .
from the hospital in the spring of 1973, 1 no longer had either the
strength or the ability to handle these very personal tasks. In-
stead, I've asked my live-in helper to add this duty to his others.
We have the procedure down to such a science that, from the time
I get up in the morning until I appear at the breakfast able, only
about three-quarters of an hour elapses. (1977:121)
Tangible symbols of simplifying include moving to a one-

story home in an "adult" housing development, eliminating
entertaining guests, and deciding to use a handicapped parking
spot. However, with each change may come unwelcome sym-
bols of loss and of self as well as chosen trade-offs.
Vivid symbols result from sharply defined categories and
shared understandings. Using a wheelchair, for example, sym-
bolizes taking on an identity as seriously disabled. Jean Stew-
art's crutches caused much difficulty: "Three full years of this
nonsense with crutches lay ahead, before I would begin to ac-
cept the idea of using a wheelchair. That wheelchairs could be
thought of as conveniences rather than as portable prisons, or
worse, badges of moral capitulation, was a life-transforming
concept that simply did not occur to me" (1987:131). 5
An appliance that simplifies logistical problems and arduous
tasks can confound self-image and social identity. Hence, some
ill people prefer to stay at home or to risk heart failure, a fall, or
exhaustion rather than use a walker, a wheelchair, or a handi-

capped parking space. A first indication that they need help can
occur when ill people try to make their way through large park-
ing lots or international airports. Mark Reinertsen said, "I went
to the Grateful Dead concert and had to park way out. I had to
stop three times going across the lot and really didn't know if
I'd make That really bothered me." Ill people may simplify
it.
their homes, reconstruct their routines, and reroute them-

selves, but they cannot exert similar control over the distances
in a parking lot or an airport. They need help.
Using a wheelchair or a cane are ways of simplifying that
people remember and may discuss. Other ways of simplifying
—
can remain more hidden sometimes by intent, but more likely
1 52 _ PROBLEMS IN EVERYDAY LIFE
because they become a part of life. For example, a young

woman distanced herself from co-workers to avoid becoming
involved in their time-consuming chatter during work and tir-
ing social events after work. An older man feigned more confu-
sion than he felt when he received requests that he wanted to
refuse. A middle-aged teacher discouraged student contact and
demands through sullen looks and sharp retorts. Of course,
people may have perfected such tactics long before any chronic
illness affected them.
What begins as a way to simplify life can result in later prob-
lems, dilemmas, and stresses. Here, the trade-offs do not work.
Moving closer to work to avoid a lengthy commute can result in
losing contact with friends, as several people discovered who
had no time or energy to make new friends. Seeking relief from
the stress of city life by moving to the country can produce
boredom, relentless poverty, and no medical coverage, as sev-
eral other people found. Living at an easy pace in retirement
may end when money gets tight as an older woman discovered
when her life savings evaporated after one medical crisis. Main-
taining a shared living arrangement becomes tenuous when
health fails, rent climbs, and income dwindles, as the woman
who lived with her mother discovered. Reducing work hours
can lead to constant worry about money and independence, as
a number of people found.
Reordering Time and Scheduling
"What should be my first priority? "Should I plan to cut

,,
back my work hours?" "How can I fit rest periods into the
day?" Whether or not to schedule, what to reorder, and when
to do it bring ill people face to face with the trade-offs they will
make; their existential dilemmas become clearer. Most ill people
who work must make trade-offs between time commitments.
However, it does not always occur to them to negotiate their
scheduling needs, or they may lack the power to do so. In
addition, some ill people sometimes schedule for their maxi-
mum level of functioning, without taking the questions above
Living with Chronic Illness mm 153
into account. They attempt to fit themselves into other people's

schedules or an organizational one. When these people cannot
function at their maximum level, or meet the organizational
schedule, they withdraw entirely. Later, a few of these individu-
als begin to make trade-offs, if they discover that doing so
might afford them more control over their lives.
Trade-offs in reordering and scheduling the day develop in
three ways. First, when illness permits, people meld time for
illness into an already scheduled day. They extend or adapt
their schedules to include illness. Second, when illness wor-
sens, they feel forced to change their lives, and develop "health-
ier" routines. Third, when ominous warnings develop, people
may create or revise their schedules to handle illness. As a man
with diabetes recalled:
Ibecame much more aware of the possibilities of schedules be-

cause I had a part-time job; I had classes; I needed to write
papers and I had to get exercise. I tried to get up at the same time
everyday so that I would take my shot at the same time everyday
and so therefore I tried to go to bed at the same time everyday. It
was a big change, yeah, before that I just stayed up until I fell
asleep; I got very little sleep. I never thought about exercise.
Thus, chronic illness can result in creating a structured rou-

tine when none had existed previously. For some people, the
need to schedule means facing what they had heretofore dis-
missed or ignored. But new or renewed awareness of one's
vulnerability can prompt scheduling a regimen. The man above
said, "You know before, I never noticed what I was eating, or if
I was eating. It never was of concern to me. It was as though I
didn't have — it was as though my self didn't extend to the
person who ate. I would eat, you know, if there were someone
around and they put some food on the table, I would eat it.
Otherwise, I wouldn't bother."
People alter their schedules multiple times, as illness, life, or
self changes, even subtle or minor changes. For a schedule to
work, the person has to link it to preservation of the self as well
as the body. A fragile balance of the schedule reflects fragile
health. As one woman said,
If I don't sleep well, I drag the whole next day.

I'm dragging, If
then I don't feel like doing my don't do my

exercise. Then if I
exercise, I usually don't sleep well again. If I am tired, I don't

stop at the store and I don't cook much. Then I don't eat well.
With that kind of fatigue, I can't do everything I need to do, so
things pile up and everything is slower. And if, on top of it, I get
a cold or flu, then my schedule is just shot for weeks.
Here, slots in a schedule stack upon each other like dominoes;

one slip and the entire schedule collapses, and with it, cumula-
tive effects on health. 6
Generally, as noted earlier, time conflicts between work or
family demands and a medical regimen get resolved in favor of
the former. Furthermore, someone may not have transferred
earlier work or family timeframes to suitable timeframes for
illness.For example, Ann Rorty retained the timeframe of work
long after her physician insisted that she take time off for sur-
gery. Granting high priority to work and the lack of any sick —
leave —
provide powerful incentives to remain at work, despite
ill health. Ann recalled:
He [the doctor] wanted todo an emergency surgery, because he

didn't know what the lump was. Well, I told him, "Dr.
. . .
Brown," I said, "I can't go in right now because I don't have

anyone to take my place at work. ..." All my jobs, you know,
I've always been that way. And with us down at Oscar's [a fast-
food restaurant], after I became night cook, there was no one to
take over. ... It was just putting a lot of stress on me because I
— —
wasn't I couldn't I didn't feel like I could just walk away from
it. And another thing, we don't get paid for being sick.
Reordering timeframes to account for illness may be disal-

lowed. People who had no sick leave or who had used it up
usually lost their jobs. Christine Danforth described a factory
where she had worked: "There was no such thing as sick leave
or anything like that, so you know, you went to work sick or
not. I went to work a lot of times and I was really useless. The
women that I work[ed] with are really good and they covered
for me. The bosses didn't care, I mean it was like, if you
. . .
were sick, you needed to die first before you [could take off]."
Living with Chronic Illness mi 1 55
More commonly, ill people who disregard doctor's orders

damage for a present schedule. For example, despite
trade later
her physician's warnings, a woman increased her medication
so that she could work a few hours each day even though doing
so accelerated her deteriorating health.
Active men and women often resist scheduling for illness
and treatment since trade-offs for illness attest to the reality of it
(Speedling 1982). Six years ago, Vera Mueller felt that she had
to have more regular meals, rest, exercise, and medical examina-
tions. She said, "It makes me mad. Nobody else has to follow
such a strict routine, why should I?"
One of the main reasons for reordering time is to schedule
timeouts for rest (Skevington 1986). When people work for
large organizations, finding ways to rest requires some ingenu-
ity. One woman took long bathroom breaks; another worked
quickly in the mornings and shuffled papers in the afternoon

when she became tired. Having a supervisory position helps
tremendously. A woman said, "I just tell my employees that I
have a project to finish and do not want to be disturbed. Then I
go lay down on the couch in my office/'
Reordering time and scheduling frequently involve working
around or within other people's schedules, sometimes fitting
illness into their schedules — visits to doctors, help with treat-
ments, etc. When a caregiver is also ill, he or she squeezes self-
care into the less demanding times in the other's schedule. For
several years, Nancy Swenson tried to rest, do housework,
complete forms, and run errands from 10:30 to 1:30, three times
a week. These short intervals occurred between delivering and
picking up her mother at the Alzheimer's Respite Center.
Commonly, family members must work, attend school, care
for children, and so on. An ill relative's schedule can flood their
daily round. For example, a middle-aged man felt drowsy
when he finished his thrice-weekly dialysis treatments at 12:30
a.m. Though his wife rose before dawn to get ready for work,
she routinely picked him up after his treatments. Such added
demands can easily exceed the energy of someone who also has
Ann Rorty tried to handle her elderly
a serious chronic illness.
mother's care in addition to her own illnesses, an arduous job,
a demanding partner, and her grandchildren's psychological
I
problems. After several months, she turned her mother's care

over to a daughter-in-law.
Reordering time because of illness can result in reordering
time for family and friends. Several middle-aged men realized
that before their illness, work had consumed them. After-
wards, they refused to let their work, and sometimes their
illness as well, to interfere with family time. After his heart
attack, five years ago, a businessman changed his schedule so
that he could spend evenings and weekends with his family
rather than working as he had for the previous twenty-five
years. He said:
I'm not as dedicated to the company as I was prior to my surgery.

I have more of a family dedication and I hope they never hear
that. ... If the company were —

happened to be done with you,
they cut the ties and that's it; it's all over with. And there would
be somebody else the following day to take your place and I —
really cherish the time with my family; I really do. ... If we
didn't make [family] time, it — it would just be sad; it would be
gone.
A medical or health regimen is the main reason for reorder-

ing time and scheduling. But do ill people stick to it? Maintain-
ing the regimen derives from 1) defining the consequences of
not keeping it, 2) learning to assess what one can do, 3) discern-
ing immediate negative effects, 4) feeling life is under control,
and 5) building accountability into the schedule.
If abandoning their regimen causes ill people to have immedi-
ate negative consequences, they are likely to keep it. For ex-
ample, a woman with diabetes found herself in an emergency
room after one schedule her exercise and insulin in
failure to
synchrony with her food intake. She said, "I got careless, a little
sloppy and I could have died. I know I have to be more careful
now." Similarly, if people believe their schedules help them keep
illness contained, then they are inclined to continue them.
Fear of rapid deterioration or death prods certain ill people to
keep a scheduled regimen. This fear looms largest just after a
life-threatening crisis. A man with insulin-dependent diabetes
explained, "My body hadn't let me down before and now it
Living with Chronic Illness mm 157
wanted to kill me. So I felt like I had a very powerful enemy

very close to home. I was religious in my observance of my diet,
making sure that I got exercise and ate at the right time right
from the start. Well, I haven't kept it up like that but at first I
was very absolute about it and I'd cut out alcohol altogether/'
Like this man, ill people often maintain rigid regimens after a
crisis, only to loosen or abandon them later. If they do not
experience notable gains from their new routines, or do not

notice encroaching symptoms when they begin to slip, then
they are likely to drop schedules founded on illness. After star-
ing at death during a crisis, ill people, not infrequently, distance
themselves from it later. Hence, after surgery, heart patients
maintain their exercise programs for several months but then
let them lapse. A man with a heart condition said, 'The doctor
told me that I should be walking at least two miles a day. I

started to but then with our busy season [at work], I've let it
—
slip what with overtime and all the stress."
A feeling that life is under control because of a schedule or
regimen provides an incentive for keeping it. This feeling usu-
ally develops after people have reordered time and maintained
their schedules. Following the schedule helps them minimize
uncertainty; they believe that they are doing what they can to
protect themselves and to preserve their lives (cf Comaroff and
.
Maguire 1981). These people traded putting effort into their

schedules for gaining that sense of control. Why then do sched-
ules become problematic?
Work and relationship tensions elicit feelings that life is out of
control. A man with diabetes reflected, "I think that I smoke,
eat the candy bar, or stop exercising when I feel like things are
out of control. When life seems out of control, then I lose con-
trol [of his scheduled regimen]." A woman feared that she
might lose her job. As she tried harder to please her supervisor,
virtually all her time went to her work. She did not get suffi-
cient rest or follow her diet. As she gained control over her
livelihood, she felt that she lost more control over her health.
Building accountable routines into the schedule may help.
But how does accountability work? To whom should ill people
be accountable? And accountable from whose perspective?
Gaining acknowledgment of ill people's special needs and
their efforts to meet them without demeaning monitoring

seems to work. A woman
with multiple sclerosis took water
exercise classes at the local swim
club where she was part of a
congenial group. Friends noted her presence or absence and
commented sympathetically on it. Treating her exercise pro-
gram as an important part of her social life encouraged her to
continue it. Before, she found that she easily let exercise slide
after several months.
The camaraderie, competition, and regular exercise in a car-
diac rehabilitation treatment program also offer incentives for
continuing to follow it. An accountability emerges that provides
people with social support and rewards them for their efforts.
Making the regimen part of a daily schedule helps people main-
tain it —
if they work well with schedules and will plan, organ-
ize, and follow through. Some people regard streamlining their

days as an engrossing puzzle to solve by making all the pieces of
the puzzle fit smoothly. A number of people echoed this man's
statement: "I have more time for important things because I
schedule them now; I am more organized."
Accountability through sociability results from others car-
—
ing caring about these ill people and their progress or plight.
Rather than separating ill people, scheduling here brings them
into interaction with supportive others. In short, systematic
support sustains the schedule (cf. Pearlin and Aneshensel
1986).
Accountability to self and to people other than spouse or
caregiver widens the circle of concern. Ill people with a wider
circle probably manage better than their counterparts who see

themselves as only accountable to spouse, parent, or adult
child. Being accountable only to the spouse about eating regu-
larly, following diets, taking medications, pacing, and so on can
make adversaries of the ill person and spouse, as lay practi-

tioner and patient or as parent and child. Then the caregiver
monitors and the patient sneaks. A diabetic sneaks drinks and
junk food. A heart patient slips away for an ice cream cone
instead of the prescribed walk. The adversary relation can
grow, like an untreated wart. One woman had an "ornery"
elderly uncle who had diabetes. She discovered that he had
enlisted his former drinking buddies to bring him liquor in diet
—
Living with Chronic illness mm 1 59
soda bottles. In addition, the neighbors supplied him with

doughnuts and cookies. The competition between adversaries
can deflect attention away from the reasons for the regimen as
they become enmeshed in their competition for control.
Regimens and schedules change. Some people improve
markedly. They have a remission, benefit from a procedure, or
complete their treatment successfully. Thus, ill people change
schedules not only by extending, adapting, or revising them,
but also through loosening, abandoning or reducing earlier
schedules.
Loosening a schedule opens time slots and frees blocks of
time. A remission of illness yields new hours of healthy time;
the person feels alert, comfortable, and energetic. When Patri-
cia Kennedy was in remission, she said, "It doesn't take meas
long to shower, get dressed, fix meals and I don't need to
exercise or rest as much. I have all this time now so what am I
going to do with it?"

Nine years ago, Mark Reinertsen had a packed schedule of
school, work, student teaching, community action groups, and
—
psychological growth workshops besides exhausting dialysis
treatments three times a week. Then he received his second
kidney transplant. He slowed down. Not simply because he
could jettsion a huge chunk of his schedule. Not merely be-
cause the drugs for preventing transplant rejection ate his
bones. But, because, in his words, "I'm not as concerned with
getting everything into the day as I was. I've got a lot of free
time this semester, too. I chose that. When I was on dialy-
. . .
sis, it was really to the point in my life where I didn't think I'd
live past thirty, so I was trying to get everything in. And now
months to go, I figure I'll make it, and there's a
I've got three
good chance of it. I'm not worried about getting it all in now."
Lenor Madruga had cancer, which resulted in losing her leg
and part of her hip. After being fitted for a prothesis, she
writes:
The routine daily functions that I had to do became easier and

easier. Wearing my prothesis and going up and down the stairs
became less of an effort. Doing the household chores only took
half a day instead of the entire day. Cooking was so much
—
quicker and less tiring on two legs rather than on one. At last, I
was able to carry things to and from the table without having to
dangle dishes and cups from hands which were already occupied
with crutches. (1979:169)
More commonly, people interviewed loosened their sched-

I
ules because they could not manage them as their conditions

worsened, as occurred with Mark Reinertsen some years later.
They gave up work, leisure, and friends. These people loos-
ened their schedules to allow for rest, regimen, symptoms, and
crises. They intentionally slowed down. And by doing so, they
could then better manage day-to-day fluctuations in their physi-
cal capabilities.
Perhaps the most difficult changes turn on abandoning a val-
ued schedule and facing an unpredictable life. Most try to make
the best of it by managing in whatever ways they can. Nancy
Swenson described her schedule while she raised her children:
So I always had this struggle of working two jobs to maintain

and support my kids and a lot of times to support my spouse and
keep things going ... I used to push myself. I worked a full-time
job; I commuted to work [fifty-five miles away] and worked week-
ends at Western House [a bar and restaurant] when my children
were younger, hand-milked two cows, bottle-fed calves, raised
calves; we had chickens, raised my family, and now I am lucky if
I can make it to the barn to feed the horses.
Like others who had diseases of unknown etiology, Nancy

Swenson believed that her illness resulted from the strains of
her prior she worked at relinquishing schedules. She re-
life;
marked: "Islowing down; I am enjoying people a lot more,

am
the trees." She added, "I have a real phobia about schedules, a
real phobia. It's like I enjoy going to church, but it can't be a
schedule. It can't be that I have to be there every Sunday at
8:00, or I won't go. I don't know, it's like somebody says
hands me a schedule, oh, it's like freak city, I don't want any
part of a schedule."
Giving up a full schedule can jolt anyone, particularly when
it happens quickly. Workers quit jobs or are fired. Retirees can-
Living with Chronic Illness § 1 61
not return to their prestigious volunteer positions. People who

feel spent, however, initially relinquish their prior schedules
with more relief than remorse, even when financial problems
and loneliness result from leaving work. For some people, such
as kidney dialysis patients, the rhythms of treatment formed a
schedule. Many others structured their days by how they felt,
For a number of homebound people, activities beyond treat-
ment and self-care routines became discomforting symbols of
what they no longer could do and could no longer control.
Unpredictable bad days disallow even following a reduced
schedule. Several people dwelt on the anxiety they felt about
getting to and getting through an anticipated event Christmas —
dinner, a grand-daughter's wedding, a club's annual outing.
May Morganson made plans to go to a special show at the art
museum with a group of friends. Tickets were limited. Her
friends had rented a bus and had made reservations for dinner
afterwards. She worried for six weeks about being well enough
to go.
Scheduled events also serve as symbols to other people, who
note and comment upon whether the ill person attends. And
like May Morganson, ill people look forward to the event for
months or weeks ahead of time, only to feel desolate if they
cannot attend it. Thus, they resisted scheduling because, as
Nancy Swenson said, "scheduling leads to expectation and ex-
pectation leads to disappointment." Ann Rorty explained, "I
try not to have too much —
tomorrow, I'm go-
[scheduled] like
ing to do this and this. I I ought
try not to set myself goals that
to reach; I try to be realistic about myself —
what I can do and
what I can't. If I can't do something that maybe I'd planned
—
on not to be too disappointed."
Juggling and Pacing
Making trade-offs depends upon juggling and pacing. In turn,

effective juggling and pacing make life manageable. What do
juggling and pacing mean in the lives of chronically ill people?
When do they do it? How do they do it?
—
When people juggle, they balance with priorities,

activities
and and rescheduling events
that leads, in turn, to reorganizing
and tasks. As they think about pacing, they try to control the
rate of movement during activities. Maintaining a job usually
juggling and pacing.
calls for intricate
Juggling and pacing become equivalent to managing daily life
for many seriously ill people. Earlier high levels of activity and
productivity lead to overestimating present capacity. Hence,
learning to juggle and pace proceeds through trial and error
frustrating errors. Maureen Murphy disclosed, "My biggest
thing that I've had to learn pace myself. 'Cause like when I
is to
feel really good, then I'll say, 'Oh, wow, I'm going to do every-
thing. I am going to clean things from top to stern, you know,
and I am going to make yeast bread and I'm going to do this
and I'm going to do that.' And then you get halfway in the
middle of it and all of a sudden, [groans] you're really wiped
out."
The costs of overestimating capacity can be paid in embarrass-
ment or pain. As Tina Reidel noted, "I have to be very careful to
pace myself to get enough rest or else I may not be able to get
up the next day. If I get too tired and take my muscles into
fatigue, I get spasms. They're painful because they put all this
stress on my joints, you know. If I'm not careful, I'll set myself
back."
Frequently, incentives to keep on juggling and pacing result
from responsibilities for others. A single mother commented, "I
have to pace myself, not just for me, but for them [her two
children]. Their father does very little for them. I doubt, and I
think they do too, whether he would take them if I had a
crisis." Other single mothers also foresaw no possibility of help
from former husbands who had disappeared, become alcohol-
ics, landed in jail, or who had simply married someone the
children did not like.

The extent to which someone juggles and paces depends
upon the possible trade-offs, available alternatives, and the de-
gree of control he or she has over them. While a graduate
student, Mark Reinertsen wrote his papers at the typewriter
because he felt that he could not put the time and energy into
Living with Chronic Illness h 163
revising. Lara Cobert dealt with her son's school problems and
her developing symptoms one week and let her house go until
the next. Nancy Swenson explained the kind of trade-off she
considered with pacing: "If I stay up to 11:00, I know that I'll
feel it the next day. It gives you pause when you think about
making plans. I used to be the sort of person who would go in a
minute. I can't maintain that pace. I ask myself now, 'Is it worth
it?' I may decide to go, but I think about what it will cost me the
next day, or even a couple of days."

If ill people can reorganize and control their schedules, shift
burdens when needed, and adapt their pace, then juggling and
pacing work well. For example, a retired woman decreed that
her kidney dialysis treatments could not interfere with her
aquatic exercise group, which had met regularly for over four
years. She planned her treatments around her exercise group.
Her husband took over cooking and housework on the days
she had dialysis or needed more rest.
Juggling and pacing do not work when people have unlim-
ited demands upon them but possess limited strength and en-
durance. A woman tried to juggle all the demands of her job
and to pace herself so that she could get the most important
and visible tasks completed, despite her frequent absences and
slowed pace. But she was always behind, always trying to catch
up. She would handle one major assignment and let others
slide. Then she would have to work all weekend to try to catch
up before the other undone tasks became visible. And if she
worked all weekend, she had trouble getting through the next
week. Another acute illness, another absence. If she rested all
weekend, then she faced having panicky feelings about piles of
work, discovery by co-workers, and another demeaning repri-
mand from her supervisor.
Many ill people juggle and pace to keep up with others who
do not have the added burdens of illness and regimen. Para-
doxically, some of these people discover that their juggling and
pacing make it possible for them to outshine their peers. Their
efforts take them beyond the worlds and the achievements of
their peers. Consider the statement Vera Mueller made after
she had returned to college for her B.A. degree:
Sam [her boyfriend] is so jealous of what I am doing; he's so

jealous of my have not had time for
involvement with school. I
—
him to swim around in his own confusion. What I have . . .
had to do is withdraw from him. I have had to pull back my

involvement because in order to be involved with him I have to
work on his timeframe and he is mellow yellow and I'm not. And
in the process we have lost a lot of what linked us together.
When people work, the juggling and pacing that they do to

maintain their independence results in limiting, or even losing,
friendships. Maintaining independence may even be an explicit
trade-off for losing friends. When Sara Shaw was establishing
her career, she observed, "I'm not I don't know if reciprocal is —
—
the right word or not I don't give 120 percent for my friends, I
really don't. Making a living is more important to me than
. . .
anybody."
Then friends get jettisoned. Sara Shaw needed to pace her
meals and rest periods, which occasionally resulted in disputes
with friends. After waiting for a tardy friend with whom she
had had dinner plans, she left. She reflected:
Well, I say what I need. I say it very bluntly a lot of times. . . .
When I was talking with to Suzanne had expected

[the friend she
to meet] she was saying, "Well, I can see your point and I can see
your justifications, you know, for things, but I don't feel like you
can see mine at all." .1 only trust myself, ultimately and stuff,
. .
and I know that if I don't eat or if I'm late [in eating], I know that
—
I'm not going to be all right that I have to do that. And so I'm
real selfish in that kind of stuff. It's like I can see what she's
saying, but I think that I overrule it. . . . If she can't be there, or,
you know, they can't do it the way I need it, then too bad. And
it's hard to have friends that way.
Juggling and pacing allow people to remain active, to main-

tain valued pursuits, to contain illness. They are able to pre-
serve chunks of their earlier lives and previous selves. They
keep pace with others and meet the terms set forth by others,
be they employers, co-workers, or relatives. If illness remains
in the background of their lives, ill people describe juggling
and pacing as resulting from other concerns than symptoms
Living with Chronic Illness 1 65
and regimens — work, spouse's job, children's activities, family

crises and the like. When a middle-aged woman suddenly ex-
perienced disturbing and disabling symptoms, she slowed
—
down markedly. Despite this change, she viewed her prob-
lems in juggling and pacing as derived from her newly retired
husband's increased demands on her time and her son's drug
use.
Lessons about juggling and pacing learned when very ill can
last.These lessons take feelings into account as well as physical
status. Sara Shaw had an opportunity to get a prestigeous job.
She said, "Most people would jump for it no matter what, but
I'm not ready for it and I know that; I learned to follow my own
pacing when I was sick." She added, "Emotionally, I'll be mak-
ing jumps that I won't let myself do for a long time, a lot longer.
I don't jump emotionally. I don't see myself leave anything like
that [her steady job] at the drop of a hat for a long time. I'd say
my emotions go first, then I watch it and try it out for a long
time before I make any moves."
Organizing, simplifying, reordering time, juggling, and pac-
ing also become a part of caregiving. Whether or not caregiving
can continue rests, in large part, on effective control of these
processes, particularly when the bulk of the work falls on one
caregiver.
Juggling and pacing get complicated when both "patient"
and "caregiver" have chronic illnesses. But even if reciprocity in
juggling has existed for years, one partner's more rapid decline,
more visible disability, or more serious diagnosis shifts the bal-
ance. That partner becomes defined as the patient and the other
as caregiver. When this definition rules the household, some
"patients" will not budge from their "appointed" roles, almost
as if they have received tenure as patients.
Subsequently, the needs of the caregiver seem miniscule, or
nonexistent. If so, then an ill caregiver struggles with his or her
illness almost entirely alone. An older man was steeped in self-
pity about developing severe heart disease shortly after his retire-
ment. He expected his wife to attend to his fears, symptoms, and
routines. Two years later, she had a mastectomy, followed by
radiation and chemotherapy. Though these procedures might
shift the patient-caregiver roles, in this case they did not. He still
expected her to juggle her needs around his. Here, long-

established patterns gave precedence to his needs.
When someone claims tenure as the patient, virtually all the
juggling and pacing falls on the caregiver. This arrangement
might work if the caregiver's physical and psychological health
holds out. But often it doesn't: the relationship deteriorates;
home health services become prohibitive or undependable; the
caregiver dies.
Yet when partners have long taken both of their needs into
account, they exchange patient and caregiver roles as needed
for years. Despite having had four heart attacks, an older man
—
took interest in his wife's pursuits he drove her on errands
when she was tired, typed her college papers for her, involved
himself in the household and family activities. She had cared
for him during his heart attacks; he cared for her after she had a
stroke. These reciprocities buffered the strains of caregiving
and gave the couple a sense of completion of the relationship.
As ill people remake their lives through planning, organiz-
ing, and making trade-offs, they learn what it means to live
with illness and disability. Tiny daily tasks such as getting
bathed and dressed, cooking, and driving reveal images of an
emerging self. For many, the learning continues as their condi-
tions and treatments change, for the better as well as for the
worse. For others, learning to reconstruct their lives in new or
different ways simply is not possible. Instead, they jettison the
tasks or depend on somebody else to do them. Withdrawal
and lowered expectations follow. But those who invent ways
to handle those tasks that pose major barriers and make trade-
offs to preserve valued pursuits often gain a sense of accom-
plishment and pride.
1
PART
Illness, the Self, and Time
In this section, I turn directly to relationships between illness, the self,
and The elusive experience of lived time takes on sharper form

time.
when studied from the vantage point of what ill people think, do, and
feel about time. People with chronic illnesses provide mirrors of time
and self for other adults, because time and even having a self become so
problematic for them. Hence, their thoughts, feelings, and actions
about time reflect a distilled version of adult life.
In Chapter 7, I address how ill people structure and restructure the

present. To do so, I look closely at the mundane ways that people try to
structure time, and at their ordinary language that shapes meanings of
their attempts to do so. I emphasize what the present looks and feels like
when illness has made life uncertain. I show how time perspectives
reflect theways that people structure time. Chronic illness can drasti-
cally affectwhat people believe that they can and should do in the
present. Hence, their ways of structuring the present are likely to shift
as their health changes. For many people, changing their ways of
structuring time also means changing their perspectives on past, pres-
ent, and future —
which is often a much harder task. But should they
do so, maintaining the restructured time becomes habit.
Ideas about the past influence the present and future. In Chapter 8,
discuss how people take note of their past with illness. They create
bench marks and illness chronologies of this past. They attribute mean-
ings of some bench marks for their developing selves. They define
certain events as turning points. They find some events so significant
that their effects shape feelings and self-images for months or years. I
show how past feeling-laden events become turning points for self, not
simply of illness.
From there I move to Chapter 9, the last major chapter of the book. In it
I propose that people's self-concepts come to be tied to the past, present,

167
1 68 mb Illness, the Self, and Time
or future. Time provides implicit ways of knowing and defining the self.
People come to treat the past, present, or future as pivotal for organizing
concepts of themselves although they usually remain unaware of how
rooted their self-concepts are in time. Lessons that ill people began to
learn by restructuring time and rethinking their ideas about it, if contin-
ued, have consequences for locating their self-concepts in time. Those

lessons may be forced upon ill people by growing disability and increased
loss of autonomy. A quasi-institutional living arrangement by itself
forces an individual to restructure time and promotes a revised time
perspective. Furthermore, the meanings of past marker events influence
feelings about and definitions of self that may keep people in the past. In
short, I argue that the social conditions of experiencing chronic illness
foster taken-for-granted ways of anchoring the self in the past, present,
or future.
—
7
Time Perspectives and Time
Structures
Living one day at a time. Yeah. That's what I tried to work on. . . .
Every day was just a struggle. I'd take painkillers and that didn'twork
so it had to be every day. Every day it seemed like the arthritis was
different and it wouldn't go away. Sometimes it
. . . was just like
really horrible and other times it was less. That's supposed to be one of
the factors, this up and down. ... 7 think since the arthritis has gone
into remission it's not so much, you know, every day, but I still try to
look at it as just every day is a new day.
Living one day at a time was living on the edge, the razor's edge.
But I think when I was taking one day at a time was really frightening
because each day would be so different. And then it would be a big
struggle just to get to work, just to get dressed, just to get to the bus. I
would just concentrate on the one day.
Living one day at a time. Being on the edge. Searching for

relieffrom pain. For three years, Tina Reidel had had unremit-
ting pain from active rheumatoid arthritis. Time shrank into the
present except when drowned by waves of fear. "Will it always
be like this? Will it never go away?" At those points, her image
of the future overwhelmed her.
During this period, Tina tried to get through the work week
one day at a time. On Saturdays, she usually stayed in bed
spent and tormented by pain. On Sundays, friends offered her
rides to the meetings of her Eastern spiritual group. Unable to
others' expectations, she felt their irritations, disappoint-
fulfill
ments, and accusations. Her lover expected her to do the

housecleaning; it remained undone. Her supervisor demanded
169
170 — ILLNESS, THE SELF, AND TIME
that she finish typing his reports; she seldom made his dead-
lines.Co-workers urged her to go on disability, and her supervi-
sor bullied her. However, she felt that she could keep the job by
taking one day at a time.
Later, Tina Reidel's arthritis improved for a few months.
Her pain markedly lessened and her fears subsided. She be-
gan to look toward a future. As her time perspective began to
expand to include the future, her social worlds widened. New
questions arose: "Why am I in this relationship?" "Where am I
going?" New possibilities emerged; a fellow spiritual seeker
asked her to marry him. Tina began to explore maps of the
future.
How does experiencing chronic illness affect time perspec-
tive? Conversely, how does time perspective affect experience?
Under which conditions does someone's time perspective shift
and change? What views do people have of the present? How
do they use it? How might their experience of the present shape
their perspectives of past and future?
As evident in the preceding chapters, serious chronic illness
forces active men and women to restructure time. In turn,
changes in structuring time promote changes in perspectives
about time. For clarity, a time structure denotes how people
frame, organize, and use time. Consistent with Barley (1988),
beginnings, endings, rhythms, cycles, and changes all contrib-
ute to a time structure. In contrast, a time perspective means
ideas, beliefs, and views about the content, structure, and expe-
rience of time.
In this chapter, I look at the present and examine how ill
people's thoughts, feelings, and actions toward it shape their

time structure and reshape their time perspective. Meanings
of the present set time horizons and give substance to images
of past and future (Jaques 1982; Mead 1932). Ill people de-
velop prescriptions and implicit goals for relating to the pres-
ent, such as living one day at a time or recapturing the past.
Throughout, I explicate their implicit meanings about time
and outline conditions that prompt them to revise, adapt, or
change a current time perspective, or encourage them to re-
sume an earlier one.
Time Perspectives and Time Structures 171
Altered Time Structures and Shifting Time Perspectives
Forced changes in structuring time can cause shifts in time

perspective. 1 When does time structure shape time perspec-
tive? What contributes to retaining or maintaining an earlier
time perspective? When are time structures and time perspec-
tives incongruent?
Temporal Incongruence
Temporal incongruence develops when time perspectives are

incompatible and inconsistent with time structures. When
health has noticeably declined, a previous time structure based
on multiple time commitments seldom works anymore. Yet ill
people's assumptions about viewing and using time may not fit
the time structures that their bodies permit. Following his near-
death crisis, a middle-aged man said, "My time perspective has
been jilted around a little bit." Alternatively, immersion in a
lengthy episode can lead to adopting the time structure and
perspective of convalescence unwittingly. Should these people
return to earlier pursuits, they may find that their assumptions
about viewing and structuring time are incongruent with those
of other people.
Temporal incongruence tends to be discovered through daily
events. A woman with arthritis took a full-time job. She had
difficulty getting enough rest, doing her water exercises, keep-
ing the house, and spending time with her husband. When her
daughter returned to the area, she added socializing and occa-
sional babysitting to her already packed schedule. Another
flare-up decimated her schedule. She said, "That last flare-up
made it clear to me that being that busy is just not that
—
important it's too much for me, but it is hard to change the
way I think about using time."
Such realizations do, however, prompt shifts in time perspec-
tive. In turn, when an ill person's shifting time perspective
butts against that of other people's, conflict results. Conflicting

1 72 — ILLNESS, THE SELF, AND TIME
time perspectives are played out in daily plans, priorities, and

pursuits, as people structure time. However, underlying as-
sumptions about time typically remain hidden. Instead, people
make mutual accusations of blame, poor motivation, power-
grabbing, and the like.
Temporal incongruence when intimates do not share
results
similar ways and structuring time. Hence,
of thinking about
conflict emerges when making daily schedules and projecting
timetables (Roth 1963; Zerubavel 1981). A middle-aged man
had convalesced for several months when his wife began to
push him to go back to work. He remarked:
My wife put it to me one day; she said, in one of her less charitable
moments . "What are you going to do? What are you going to
. .
do today? Well, what are you going to do today? Recover?" And I

went and I thought, I said, "What I'm going to do today is try to
live my life without reacting to structures that I can't meet [or]
cope with anyway. And that's basically the whole philosophy of
life I guess I am approaching the world with these days. At least to
the extent that I can. And it's really severely important to me — to

not live my life according to somebody else's, or some external
structures that I can't cope with.
This man found meaning in his illness by explicating prob-

lems that had existed before it. By devoting the present to
search the past, one hopes to avoid recreating it in the future.
Yet to a partner, the ill person's present timeout or extended
convalescence foretells continued illness and a curtailed life.
Thus, the partner prods the ill person to resume an earlier time
perspective and structure. The process occurs in reverse when
an ill man or woman adheres to an earlier time perspective and
time structure but the partner believes it now inappropriate or
impossible and argues for change (Speedling 1982).
Problems in structuring time may precede illness. Subse-
quently, illness causes an already shaky time structure to
crumble. At the very least, illness illuminates and magnifies the
rough spots that affect daily time structures, such as financial
problems, marital conflict, and job instability. Dealing with
these problems leads to shifts in time perspective.
Time Perspectives and Time Structures 173
An untenable time structure may derive from external de-

mands upon the ill one. Time shortens because of the interrup-
tions from other people. Children, co-workers, and demanding
spouses all affect an ill person's time structure. Four years ago,
Nancy Swenson's chaotic household wreaked havoc with her
attempts to structure her time. Her foster daughter stole from
her purse and lied at school. Her adult daughter separated from
her husband and moved in and out. Then her son-in-law
moved in briefly. Her dogs clamored for attention; her mother
demanded it. Helpers occasionally came to work with her
mother, but relied on Nancy for direction. During this period,
Nancy suffered from insomnia. Fatigue, combined with other
symptoms, impaired her mental concentration as well as her
physical functioning.
The structure of Nancy Swenson's day resulted from the de-
mands imposed by her mother's care and behavior. Her day
shrank to uneven segments, interrupted minutes, and brief sec-
onds when she could focus her attention. The chaotic house-
hold magnified and intensified Nancy's fatigue and difficulty in
concentrating. Further, exacerbations of her illness directly af-
fected her mother, whose disruptiveness then escalated. Nancy
explained:
But my mom can see and tell when I'm not feeling well. But with
the Alzheimer's she knows something is wrong, but her brain
doesn't tell her how to deal with it. . . . She gets angry at me and
makes things very difficult for me. And I get to where I — I just
don't even want her to be in the same house with me. She . . .
just won't leave me alone. And if I'm trying to get dinner

. . .
ready and I'm already feeling bad, she's in front of the refrigera-
tor. Then she goes to put her hand on the stove and I got the fire
on. And then she's in front of the microwave and then she's in
front of the silverware drawer. And —
and if I send her out she
gets mad at me. And then it's awful. That's when I have a really,
a really bad time.
If Nancy tried to work on paying bills, her mother took her pen
and scattered the bills. If she attempted to fill out Medi-Cal [Med-
icaid] forms, her mother hid her glasses. Though Nancy kept her
174 ILLNESS, THE SELF, AND TIME
time perspective close to the present, her present rapidly disap-

peared. Chaos devours time. Illness magnified Nancy's inability
to manage time and to structure her life comfortably. She said, "I
think, instead of just sitting hereyou could be doing paperwork.
You could be getting all the doctor bills together and doing this
and doing that. And I feel myself procrastinating. Well maybe
tomorrow will be a better day. And the next thing I know, the
time —
time is gone."
Reorganization at work can make a manageable illness un-
manageable as new time structures become untenable. Produc-
tivity speedups due to reorganization, promotion, or layoffs of
co-workers wreck time structures. Several individuals had
found it hard to handle their workload before a change in-
creased it. Afterwards, they could not handle it. A corporate
takeover had left a middle-aged salesman responsible for cover-
ing a larger area and for making higher profits in a tighter mar-
ket. He felt that these changes contributed to his heart disease:
I worked for Healthtech Pharmaceuticalsand we sold blood

therapeutic products. And I was a used car salesman at
felt like I
times, because everything was based on price and I would be

running all around the countryside delivering vials of blood here
and there and the other place, getting prices from the company,
kind of fibbing to the company, telling them that my competition
was lower so they would give me a lower price, you know. And,
I was working out all kinds of deals. It was really traumatic.
Conversely, the tempo and time perspective imbedded in an

illperson's social world can mask illness and affect mood but,
simultaneously, provide an untenable time structure for main-
taining his or her financial independence. For example, John
Garston lived in a cluster of cabins where most of the residents
led "Bohemian" lifestyles as artists, poets, and aging hippies.
Distances between cabins were short and the pace and tempo
of life was unhurried, so moving slowly was hardly noticeable.
Further, several neighbors alsohad financial crises, little work,
and were concerned with immediate needs like rent and food.
A time structure with a slow tempo combined with a time per-
spective based in the immediate present can make taking initia-
Time Perspectives and Time Structures mm 175
tive and giving extra effort especially difficult when one is ill.
John's work in antique restoration largely depended upon his

own resourcefulness in obtaining it and upon his perseverance
in doing it. He said:
I'm real lazy. That's contributed greatly to, you know, the illness
and the laziness are just going — they're going back and forth
contributing. ... I around and diddle around instead
just sit
of—instead of doing, doing chores or doing this and that. . . .
There have been periods when I have had very high energy,
where I've worked twenty hours a day for, you know, a year at a
—
time or so, and or more, and had a lot of drive. And then, you
know, something's happened to just blow things away
John believed that his illness contributed to and magnified

his current apathy and lassitude. His time perspective re-
mained in the present yet his time structure led to experiencing
time as moving swiftly. He shortened the day by starting it as
late as possible (after his usual early morning insomnia), by
ending it early, and by breaking it into segments. He com-
mented: "The days pass amazingly swiftly for someone as
bored as I am [laughs] 'cause I sit and diddle around and
. . .
read and drink coffee and smoke cigarettes, and all of a sudden
it's
— —
you know, and I of course I try to go to bed as early as I
can. Try to sleep as late as I can."
Role Models of Structuring Time
Lengthy treatment in a medical facility permits ill people to

witness what happens to patients with similar conditions. As a
result, some people resist letting illness take over their lives
because they have visible, immediate, and negative role models
of those who do. Simultaneously, they may find themselves
becoming role models for others because they have lives be-
yond illness and treatment. When he was a graduate student,
Mark Reinertsen mentioned, "It's like I'm the role model be-
cause I'm the only one actively doing something, at least on my
shift. And it's like they all look up to me and I'm not sure that I
want that. It's like a crazy responsibility and I'm not sure that I
really want that."

Because Mark Reinertsen pursued interests beyond dialysis,
the staff liked the way he structured time for them. His pursuits
—
were noteworthy exemplary. Consequently, the staff also ex-
pected him to be an exemplary dialysis patient. Mark said:
The thing that bothers me is when I come to dialysis first of all,
it's a free time for me; it's a time that I don't have anything
scheduled that I have to do. I can do anything I want. I can read;
Ican watch a soap opera, which I do quite often; I can sleep. And
that's four hours. And I bring what I want to eat, not necessarily
what's on my diet, but what I want to eat. These are things that
other people look at like, "how incorrigible," when you are defi-
nitely on a diet. I bring olives, potato chips, cheese dip. One
nurse came up to me and said, "Alicia really looks up to you,
what do you think she thinks about that diet?" It's like now I
have to watch what I bring to eat there because I'm a role model
there so it's a whole different role to be in.
the staff choose patients as role models who

More frequently,
fit both their interests and their regimens into their time struc-
ture. For example, an older woman was initially devastated by
having kidney failure. But after she became acclimated to dialy-
sis, she became the staff's annointed role model. She said:
There's a lady up in Fairville who just started dialysis up there

and the worker wanted to know if I would talk to her and
social
tell her that you can still have a life and be on dialysis. I'm going
to . .talk with her about the diet, your fears of all the other
.
things and about dialysis. I'm going to tell her that you can
schedule around it and still have a quality life.
Harry Bauer's diligence made him a role model for others in

his cardiac rehabilitation program. Though long retired, he nev-
ertheless maintained an active schedule that included rigorous
exercise. He described a typical day: "Still get up at 4 o'clock." I
asked, "Then what do you do?" He said:

Time Perspectives and Time Structures mm 1 77
Well I read; I read a lot of stuff in the stock market. Then at 5:30
my wife and I go over to our grandson's and she babysits over
there, our grandson, and I come home usually about —it's
—
around 8:00 and fix myself some breakfast, go for my I'll either
go for my three-mile walk first and then eat breakfast. I usually
do it that-a-way, and then after breakfast, I'll ride five miles on
my bike and then this afternoon, I'll do another five miles.
In contrast, negative role models structure time in ways that

either preclude, ignore, or contradict regimens, or encourage
wallowing in illness. Negative role models prod an ill person to
maintain or create a time structure based on maintaining cher-
ished involvements as well as physical and mental health. For
example, Mark Reinertsen viewed a young woman whose an-
orexia had resulted in kidney failure as a negative role model.
He observed that her life had shrunk to coming to dialysis and
being a helpless victim. He remarked, "I don't want to listen to
that. I don't want to be like that."
People who had active lives before try to create time struc-
tures that permit them to be active and productive while ill. But
even active men and women eventually have to slow down. A
new endeavor may reveal the changes in structuring time. In
turn, the changed time structure prompts shifts in time perspec-
tives. For example, except for timeouts for his transplant and
acute illnesses, Mark Reinertsen had maintained a normal pace
through his teaching credential program and practice teaching.
But five years later, he could not handle the same pace as his
peers in graduate school. The contrast in time structure was
striking to him. His classmates, who held jobs, moved through
the program on time; it took him 50 percent longer to complete
it, despite taking a lighter load and devoting 100 percent of his
time to it.
A highly structured professional training program provides
clear indicators of timing and pacing. Set timemarkers denote
beginnings and endings and chart whether one is ahead, be-
hind, or on time. Due to an inheritance, Mark Reinertsen did
not have to work after he graduated. Instead, he took a break to
recoup from the rigors of graduate school and to enjoy his new-
found affluence. That period became a "natural" break in his
which he defined as a time for himself. However, he also

life,
suffered numerous complications at that time. But since he was

taking a break, how he perceived and structured time and —
—
how much time illness now took remained less apparent than
when he had deadlines, schedules, and cohorts with which to
compare himself.
Living One Day at a Time
Living one day at a time means dealing with illness each —

—
day but only one at a time. When people do so, they hold
future plans and even ordinary pursuits in abeyance. Their
future is unsettled, or entirely uncertain. For most people, liv-
ing one day at a time tacitly acknowledges their fragility.
Living one day at a time also allows people to focus on ill-
ness, treatment, and regimen without being overcome by
dashed hopes and unmet expectations. Taking this stance pro-
vides guidelines for functioning each day and confers some
sense of control. By concentrating on the present, ill people
avoid or minimize thinking about further disability and death.
The felt need to live one day at a time can drastically alter
one's time perspective. Living this way pulls the person's atten-
tion into the present and pushes once projected futures further
away. Earlier visions of the future recede without disruption
and slip away, perhaps almost unnoted. The present is compel-
ling and, eventually, may seem rewarding. If so, the content of
time changes; moments become longer and fuller.
Living one day at a time is a strategy for managing chronic
illness and structuring time. Moreover, it also provides a way
of managing self while facing uncertainty. It gives a sense of
control over one's actions and, by extension, a sense of control
over self and situation. Embracing this strategy also alters time
perspective.
When ill people feel compelled to live one day at a time, they
try to relinquish past visions of their future, despite their earlier
commitment to those visions. A sixty-year-old woman with a
minor heart condition cared for her husband who had serious
Time Perspectives and Time Structures 1 79
heart disease. Because her mother and aunts had lived well into
their nineties, she expected to more years and
live at least thirty
to survive her husband. He had lost his job, just three years
before he could retire. While she anxiously attended to him,
she planned to get a job for the first time in almost forty years.
After a crucial house repair wiped out their life savings, she felt
immense pressure to find work. Shortly thereafter, she suffered
a small stroke from which she made a good initial recovery. She
said, "I have to see it [her CVA] as a warning. I can't let myself
get so anxious. I have to live one day at a time."
For this woman, changing her time perspective constituted a
radical shift. Her time perspective changed from looking for-
ward to an attenuated old age to living one day at a time. She
had to work at it. Because her earlier time perspective had
made the future real and vivid, the possibility of a foreshort-
ened shocked her. Although she had described herself as
life
"nervous" and "high strung" long before her stroke, after-

wards, she saw her anxiety as life-threatening. She said, "I just
can't let myself get so upset. I can't try to do as much, and I
have to keep calmer about what I do."
To her, living one day at a time meant monitoring her emo-
tions about daily irritations and trying to control her fears about
disability It also meant reducing her daily schedule
and death.
to decrease her panic about not getting everything done. Her
emotional monitoring took precedence in structuring her days.
She reduced her community work, household tasks, and family
events, and deferred the job search. Her family also defined her
CVA as a serious warning and encouraged her to live one day at
a time.
Like others, this woman believed that she faced death and
that her emotions could cause it. Such men and women feel
coerced into living one day at a time. They force it upon them-
selves, almost with clenched teeth. Here, living one day at a
time resembles learning an unfamiliar, disagreeable lesson in
grammar school; it is an unwelcome prerequisite to staying
alive.
At one point, Patricia Kennedy faced losing her physical inde-
pendence again. For her, expressing fear helped her to look at
—
her growing disability and brought her back to living one day at
a time. Subsequently, she felt more control over her fear and
her life. She said of her fear:
Ihave to verbalize it. I usually cry. I've cried a lot in the last week.
Sometimes, Kathy, I feel better after I have cried because it is
. . .
a venting of the fears. And the doctor— the neurologist the other
day was telling me, "You know, if you come face to face with
what you are afraid of and look at it, then you can deal with it."
And I think that that's the truth because the bottom line was
when I first started getting it in my leg ... I was scared to death
that would be in a wheelchair and that's the bottom line fear.

I
The more recent fear is that if I go on the ACTH [steroid treat-

ment] I will have to go into the hospital, and I don't want to do
that. So I cried a lot about that last night. But then I think I've got
to where I can take each day at a time.
For her, living one day at a time included relinquishing some

future plans —
retirement projects, private colleges for her sons,
expensive vacations. For people who once had a future mapped
out in detail, living one day at a time not only sweeps away their
future time perspective, it overturns their time structure. Patri-
cia Kennedy remarked:
When you've been a person who set long-term goals, then short-
term goals are hard. And not being able to make a commitment is
really difficult. I was saying to someone just the other day, "Not
being able to can drive or I can do
say, 'Oh, I that, go to that
function in two weeks,' because I don't know — that's hard for
me.
Living one day at a time reveals emotions embedded in the

experience of illness. Many ill people, especially older people,
express greater fear of dependence, debility, and abandonment
than of death. Living one day at a time helps to reduce their
fear that the future will be worse than the present. During a
series of setbacks, Mark Reinertsen murmured, "I try to live
one day at a time because it is just less frightening." Later, he
observed, "I could just get really tied up in what might happen
[death or further deterioration], since so much has happened in
—
the last six months [multiple complications and iatrogenic dis-

eases]. But what good does it do? I can only handle today."
Similarly, Kathleen Lewis writes about learning to live one
day at a time after her diagnosis of lupus erythematosus:
I found myself consumed with fear of what the future would

hold and longing to have things back the way they were in the
past.
Shadows of my new life began emerging, but I found myself
imprisoned by the bars of yesterday and tomorrow. In a mere
survival struggle I found myself praying, "Give me this day my
daily bread," trying desperately to focus on one day at a time
one moment at a time.
I found that it took intentional effort not to dwell on thoughts
from the past and future, but to concentrate on my todays. Tak-

ing one moment, one day at a time was more manageable. It set
me free to enjoy and experience where I was.
I would slip back into my old patterns and have to will myself
back to the day-to-day, moment-by-moment frame of mind. I

realized that I couldn't control what thoughts came into my
head, but I could control what I did with them. (1985:25-26)
Living one day at a time mutes "negative" emotions fear, —

guilt, anger, and self-pity —
and even gives one a sense of con-
trol over them. 2 By living one day at a time, Mark Reinertsen
said that he didn't punish himself for not following his strict
diet earlier. A woman said that it lessened her regrets about
forced retirement. Another woman found it helped her to check
her anger and to limit those nagging "why me?" questions. She
remarked, "I don't keep prying into the past; I've quit that and I
can let it go."
Further, living one day at a time quiets feelings of being
overwhelmed by illness and regimen. By exerting control over
the day, people avoid feeling that managing illness is an unbear-
able life sentence. A woman with diabetes remarked, "If I kept
thinking that I can never have chocolate or cookies again, then
I'd feel overwhelmed and deprived. But if I just think, 'I'm not
—
going to have any chocolate or cookies today period,' then I
feel all right about it."
By gaining a feeling of control over the day, ill people believe
that they have made some improvement and are winning their
struggle against illness. Before severe heart disease forced his
retirement, Harry Bauer's fast-paced position meant weighty
Ten years later, he said, "I kind of take it [life]
responsibilities.
from day to day. Even though my investing s on the long term,
7
I don't, uhm, really see that I'd make much changes in the
future, probably go along like I am doing nothing bothers

. . .
me anymore. ... I used to worry about things. I don't worry

about nothing anymore. It flows off my back like water off a
duck's back."
Living one day at a time helped Harry Bauer reduce his fear
and structure his day. Moreover, he gained control over his life.
Paradoxically, by gaining a sense of control, he again foresaw
having a future. He said, "I feel great since the surgery; I feel
better with the exercise program and diet than I have in years.
I'm planning on living another twenty years!"
Through either present intent or prior life structure, living
one day at a time can become a habit. An elderly woman
cared
for her invalid husband. Her health failed as she aged and as he
deteriorated. She had, in many ways, lived one day at a time
for much of her life. Their lack of plans did not bother her
nearly as much as her arduous days and her husband's ungrate-
fulness and refusal to acknowledge her health problems. The
doctor first estimated that she would have to care for him for
only two years. It stretched into seven. She had been living one
day at a time for so long that it had become habitual. Their
situation also continued the time perspective and structure of
their earlier years during which they had only painted a future
in broad strokes rather than in fine detail.
Certainly, living one day at a time can serve as a strategy for
handling relationships, in addition to coping with illness. Fur-
ther, living one day at a time can indicate the fluid, uncertain
future.Her own illness, limited finances, and the job of caring
for hermother with Alzheimer's, led Nancy Swenson to live
one day at a time. Also, she said about having Kerry, her foster
daughter:
It's temporary. I'm taking that one day at a time. A lot's going to
depend on Kerry and a lot of it is a lot to ask of an eleven year old
because, you know, especially the environment she has been

through [many moves, no father, a mother on drugs]. But like
I've told Kerry, I can't have hassles in my life. My life is too short.
I don't know how much time Fve got.
Living one day at a time means giving full attention to the

present. Yet it is hard to do. And living one day at a time
applies to other problems besides illness. Hence, living one day

at a time can take varied forms. Ill people may: 1) attend to it in
parts of their lives, but project a future in others, 2) concentrate
on living one day at a time during hard times, such as turning
points, or 3) begin to live one day at a time as a permanent
accommodation to illness or to life.
Like many elders, an old woman lived

one day at a time but
also framed a tentative future. She concentrated on her rest,
daily routine, and regimen. Her most demanding tasks were
meal preparation and walking the distance of one block to her
mailbox. Her regimen involved stretching her joints each morn-
ing so that she could cook and walk, counting out her medica-
tions, and taking them at the correct intervals. She projected a
future no more than six months ahead, which coincided with
her niece's Otherwise, she did not chart a future.
visit.
While in crises, many ill people live one day at a time as a
temporary strategy. They also do so when they wait for sus-
pected bad news. Living one day at a time is a way to shift
down and concentrate on immediate hurdles. Subsequently, ill
people restructure time. They renegotiate or relinquish earlier
commitments. They narrow their territory and reduce their ac-
tivities. They stop driving, avoid outings, add rest periods to
their day. They step up their monitoring. They do all this

willingly —
if it has worked in the past to stave off a full-blown
episode or to avoid a particularly nasty treatment.

People may adopt living one day at a time reluctantly as a
temporary strategy for getting through a hard time, like follow-
ing a crash diet for a period but expecting a later release to
freedom. In the meantime, living one day at a time may provide
them with a protective shield against an onslaught of troubles. 3
A crisis certainly can renew awareness of death. For some,
living one day at a time after a crisis may provide a way to find
more meaning in life. By focusing closely on priorities, ill people

begin to define their values. As one man said:
I'm relating to time differently in other ways [beyond schedul-

ing], I think more subtle and more deep ways. We all know . . .
that we are going to die. We all know that we're just here tempo-
rarily, but we all try, nevertheless, to avoid that fact. And to . . .
that sense, I think there's been a change because at least I'm

actively trying to keep that in my attention because I think it . . .
is a lot healthier to live with that idea constantly in your mind
that every breath could be your last one. ... So that adjusts
things about what is important to you.
A life-threatening crisis, however, does not necessarily lead

to living one day at a time. If people have always looked to
future horizons, theydo not easily shorten their sights to the
present and make living one day at a time a permanent strat-
egy. Mike Reilly saw himself as a future-driven, competitive
"Type A" man. He said of living one day at a time:
I think it's self-defeating. Good Christians could ask me for their

daily bread or something like that but no, I want more than that.
And I haven't lost that and that's part of my— call it anger or rage
or frustration or something. ... I can't accept one day at a
time — I just — I've tried it and it worked then [in the aftermath of
crisis], but as I'm getting healthy now, I don't want to pursue
that.
Living one day at a time remains an onerous strategy for

many people. The future seeps into the present or the past
floods it. If illness subsides, these people allow images of the
future to reflect upon their present. When that occurs, living
one day time will no longer be necessary, because these
at a
people now have hope of once again seeing a future.
The social setting and involvements of an ill person can foster
living one day at a time. For example, a few very old people in a
board and care home still possessed their mental faculties. They
had a tacit agreement to refrain from discussing their future
prospects. By doing so, they coped with a living arrangement
that disturbed and distressed them.
Time Perspectives and Time Structures m 1 85
Living one day at a time can spur someone to find meaning

and fulfillment. It can become a path to celebrating life rather
than only a forced strategy for sustaining it (Lewis 1985). Fear
of death melts away. As Nancy Swenson reflected:
I'm not afraid to die at all. I would just like to have things in
order before I die, but I'm not afraid to die. And I hope that it's
quickly and that I don't suffer. . Even if I had to go to a home,
. .
I think I could even make the best of a home. ... I feel I've lived
a pretty full life, am pretty interesting. I could probably write a

book, and it would probably be interesting enough to read. And
what more could I ask for?
Existing from Day to Day
Existing from day to day occurs when a person plummets into

continued crises that rip life apart. It reflects loss of control of
health and the wherewithal to keep life together.
Existing from day to day means constant struggle for daily
survival. Poverty and lack of support contribute to and compli-
cate that struggle. Hence, poor and isolated people usually
plummet further and faster than affluent individuals with con-
cerned families. Loss of control extends to being unable to ob-
tain necessities —
food, shelter, heat, medical care.
The struggle to exist keeps people in the present, especially if
they have continual problems in getting the basic necessities
that middle-class adults take for granted. Yet other problems
can assume much greater significance for these people than
their illness —
a violent husband, a runaway child, an alcoholic
spouse, the overdue rent.
Living one day at a time differs from existing from day to day.
Living one day at a time provides a strategy for controlling emo-
tions, managing life, dimming the future, and getting through a
troublesome period. It involves managing stress, illness, or regi-
men, and dealing with these things each day to control them as
best as one can. It means concentrating on the here and now and
relinquishing other goals, pursuits, and obligations.
In contrast, existing from day to day means getting through
the day, scraping by; life is beyond control. Poverty and crises
can preclude attending to health. Constant crises with no viable
solutions, no resolutions, can overwhelm anyone. A man with
diabetes has a few drinks to calm down. A woman with a heart
condition abandons her exercise program when her son gets
enmeshed in the juvenile justice system. An impoverished el-
derly woman tries to stretch her medication by taking only half
of the dosage.
May Morganson's retirement income barely covered her rent.
Soon she could not afford her strict diet. She relied on her tiny
garden and food her neighbors occasionally brought. As her
condition worsened, she could not stand or sit without pain.
She could not garden or cook, so she stretched a few conve-
nience foods and accepted sporadic help from her neighbors.
Loss of control can raise questions about whether ill people
will live and whether they want to. Their time perspective short-
ens as they struggle through each day. When Mark Reinertsen
had multiple complications from renal failure and a series of
—
acute illnesses, he observed, "I'm living on the edge I'm just
going from day to day, hoping I don't fall off." A woman said,
"I am so sick that it takes everything I've got just to keep going
today."
For a woman with terminal emphysema, existing from day to
day involved regimens, apparatus, and getting needed assis-
tance so that she could live to see another day. She could not
use her expensive medication and apparatus if she had no one
to help her. Without assistance, she had to exist from day to
day. John Gars ton's emphysema was less advanced. His condi-
tion contributed to his plight but did not wholly structure it. For
him, existing from day to day involved having food and shelter.
He disclosed, "My thoughts are just totally from day to day."
John's emphysema curtailed his pursuits and his poverty cur-
tailed his attending to his emphysema. He described existing
from day to day:
I'm literally my next meal, my current shel-

concerned about say,
ter, and things And
being concerned about all that,
like that.
solely concerned about that doesn't help me, in fact it hurts me in
a lot of ways because I'm not able to do long-range thinking. A
Time Perspectives and Time Structures mm 187
person that doesn't have to worry about living day to day can be
more concerned with long-range health plans.
John Garston received no help except from a few friends. But

even those who have help from family and social programs
may be forced into existing from day to day. Maria Goodvage
(1988) presents Bill's story of his environmental illness. By his
mid-forties, Bill had to abandon a professional career because
the chemicals in urban settings made him sick. His mother and
sister paid for treatment, equipment, and a cabin. He had re-
ceived Supplemental Security Income of which almost two-
thirds went to prescriptions; the remainder covered food and
payments to his mother for upkeep on the cabin. Later, when
his mother could not handle the expenses, Bill eliminated most
of his prescriptions in order to pay for the cabin. Goodvage
writes:
He can't make ends meet.Pacific Gas & Electric is about to shut

off his electricity he doesn't pay the $541 he owes for five
if
months of service. He's in debt to a pharmacy for $450.

Since Bill cut back on his medication, his IQ has gone from 140
to 85, according to research neuropsychiatrist Shiela Bastien of
Berkeley. "It's really sad to see a man with such brilliance and
creativity slip into a state over which he has no control."
Now he speaks with a stutter he shed years ago. Headaches
and dizziness keep him in bed for days at a time. (1988:15)
Prior expectations of being able to control one's life make

existing from day day unbearable. A relentless slide into
to
poverty intensifies anger and panic. Middle-class and profes-
sional people can find themselves so poor and debilitated that
they cannot function. Their fates both amaze and daze them.
What is a day like when people exist from day to day? How
do they spend the day? During a "good" day, they fill time.
During a "bad" day, they experience chaos. When people "fill"
time, the day has large blocks of time, which haunt them. Fill-
ing time seldom involves structured activity. It means strug-
gling to rest, worrying, watching television, perhaps, reading,
but most likely, simply trying to exist (Calkins 1970). Contrasts
—
between the present and the past make filling time apparent.
John Garston said:
I just go from day to day so —

I don't have the long-term worries
[about his health]. I'm just existing from day to day, yeah,
. . .
yeah. . . .Filling up the time. ... I don't go to bed satisfied. You

know, I go to bed because the day is over. ... [A few years
before] had done interesting things and I had hope of more
I
interesting things on the morrow. Being interested in some- . . .
thing like this [antique restoration] encompasses a lot more . . .
than a job.
Filling time occurs while someone waits for resolution to —

improve, to die, to get help. John Garston existed from day to
day as he waited for resolution of his court case. He admitted
that "I have a lot of stress on me right now. I have this crazy
court thing, and everything, that's driving me nuts. My oldest
friend, who's my attorney, he just had emergency heart surgery
and had to drop out and things like that, the trouble with my
child and everything —
on top of nagging poverty [laughs]."
Constant crises. No resolution in sight. Spiraling problems
and devastating illness. Chaos. John Garston' s illness was
intrusive, but not wholly debilitating. Nancy Swenson, in con-
trast, sometimes felt barely alive. In addition, she felt over-
whelmed by her other daily problems. Conditions at home
worsened as her mother became incontinent and more vola-
tile. When Nancy's illness flared up again, she said, "I just go
from day to day." When I asked what that was for her, she
explained:
Chaotic. Things are too chaotic now — the house is chaotic

there is no place I can go just for peace Foodstamps of mind. . . .
said that they overpaid me; now I have to pay them back. Gen-
eral Assistance asked what kind of help I'm getting by having my
mom here and cut me off. Welfare isn't even interested in you if
you don't have a child at home. When times are tough, . . .
living day to day is the only thing that pulls me through. When
she's [her mother] bad, it's that, well, "Thank god the day is over
with," you know, "I made it through the day. Tomorrow's an-
other day, I'll deal with that tomorrow."
Time Perspectives and Time Structures hi 189
Nancy Swenson's situation illuminates the shift from living

one day at a time to existing from day to day. Immersion in
illness and uncontrollable escalating troubles lead to existing
from day to day. alter it? An employed spouse, an
What can
good retirement pension, a comprehen-
attentive adult child, a
sive health insurance policy all provide some protection from
having to exist from day to day. Without help, housing, and
health care, vulnerability increases dramatically.
More than other men and women, and single
single people
parents existed from day to day. A middle-aged woman became
so debilitated that she had to have help in using the toilet, in
taking a bath, etc. Because no insurance program covered her,
the tasks fell to her rebellious teen-aged son, who threatened
and occasionally hit her. From day to day, she did not know
what would happen to her. A mother on welfare lacked the
stamina to leave her apartment. She could not monitor her
children's activities or protect them from neighborhood gangs.
She existed from day to day, overwhelmed by her progressive
illness, endless poverty, and fear about what could happen to
her children.
When people exist from day to day, the long-term conse-
quences of their health practices seem more distant than they
do to other, more fortunate, individuals who have similar condi-
tions. The more locked into the present these people are, the
less they will attend to long-term consequences of their actions.
John Garston said:
I'm not thinking all that much about that [his health]. ... I mean
of course I am concerned about it to some degree but, uh, I'm
more concerned about today than my long-range health plans.
I'm more concerned with getting through today, say, you know
dealing with my tensions and worries about other things. I can't
be concerned about my long-range health plans when I am con-
cerned with just getting through [the day].
John Garston felt he could handle anything with humor. May

Morganson met her problems with equanimity, grateful for hav-
ing had over forty years of health, unlike the young patients at
the dialysis unit. But perhaps for most, existing from day to day
1 90 — i ILLNESS, THE SELF, AND TIME
means living on the edge — the edge of control, the edge of

coping, the edge of desperation.
Mapping a Future
What next? A crisis ends. A treatment works. Existence changes

if and prospects improve. Living one day at a time fades
health
as someone begins to believe that tomorrow will come. Earlier
secret hopes and furtive glimpses toward the future now take
shape. A future begins to rise on the time horizon. Thus, time
perspectives shift to the future.What does that future look like?
How do people put together a life with a future? What maps
ill
of the future do they draw?

Mapping a future means expanding one's time perspective,
permitting oneself to plan, and thinking about how to move on
the map. When people, particularly single elders, note physical
losses, they may include further disability and death in their
maps of the future. For most people, however, mapping a fu-
ture assumes a better future —
more control, fewer crises,
greater prospects. Mapping a future can give ill people hope,
direction, and a sense of control. It may even give them a sense
of victory over death. A person may still hope for complete
recovery, cure, or reversal in the future. Yet in the meantime,
that individual may work toward realizing a future by trying to
control illness in the present.
Ill people map different futures at different points in their
illness and They may map a carefully revised plan
in their lives.
for the future, or they may rechart the past, hoping to recapture
it. Frequently, people will map routes for making a comeback
(Charmaz 1973; 1987; Corbin and Strauss 1988). Yet, maps of
the future may remain sketchy; people simply assume that they
will realize their futures.
The shape of the map reflects experiences and definitions of
illnessand how they shift over months and years with mood
and bodily feeling. For example, a woman who had breast
cancer with lymph node involvement remarked, 'T feel my
— —
time like a rope around me when I feel optimistic, I let it
out, the time just unfolds. When I'm feeling pessimistic, the
—
Time Perspectives and Time Structures — 1 91
rope is tight." Such can occur rapidly, even within a

shifts
single conversation. When
death is certain, ill people might
acknowledge it one moment and then during the next, map a
future that extends beyond their most promsing estimations
(Charmaz 1980b; Glaser and Strauss 1965; 1968). Five months
later, the woman with breast cancer had further metastases.
She talked with a friend about her death, expected within
months. 4 As they moved on to intellectual topics, she talked of
having a future in which she would again explore those ideas.
Perhaps at that moment, she recaptured the past and pro-
jected herself into a future.Although practitioners may take
allusions to a future as illusions and as evidence of denial,
claiming a future allows patients some hope and sustains
them.
When ill people begin to map a future varies. If aware of the
consequences of a crisis or relapse, people with heavy obliga-
tions often start while in the midst of it. For example, a single
parent said, "I have to figure out a way to go back to school so I
can get a desk job later." Similarly, people who have alterna-
tives and are aware of their plights may start sorting through
them. An older man commented, "I think I'll just retire it's —
only two years early and we've been looking forward to it. I'll
sell a piece of property I've had a long time; that'll make up for
it."
Others wait to map a future. And wait. They monitor their

bodies and their lives. They look for signs to indicate what steps
to take next. They map a future or move to the next point on the
map only when they feel assured that the worst of their illness is
over. These people map a future when they feel distant enough
from illness to release their emotions from it. Conversely, if they
feel tied to a past illness, they may forego mapping a future.
Five years after an episode of Hodgkin's lymphoma, Joanne
Dhakzak said:
Itsuddenly dawned on me, [that] I really don't have any goals

Idon't have any goals, per se —
nothing concrete. And I was
trying to figure out if for the last five years I've been putting
myself on hold. "I might not live, so why bother to set goals?"
because I might not live long enough to reach the goal.
Now that I'm getting close to the five-year mark in a couple of

months, I've made it. I'd better set some goals so have some- I
thing to work for, otherwise, I'd feel like my life and

is aimless,
I'd hate [sighs]. At this point, feel like I'm bumbling through
life as
it
opposed to
— "that's my
I
goal and how do I get to my

goal?" And it's a terrible feeling and it just dawned on me that
maybe it's all connected.
Paths to the future take varied forms. Living one day at a

time, for example, dims one's sight of the future, but nonethe-
less, has consequences for it. Despite her increasing profes-
sional success, Sara Shaw did not map a future, but she did
take a path, which led to a future. Ten years ago when she was
starting her career, she said, "I need to do the maximum that
I'm able to comfortably do at any given moment. That includes
planning, doing things for the future, but I have no real gut
belief — —
not belief but I have no real gut security that anything
I'm planning exists or will exist."
Four years ago, she had more of a stake in her path to the
future, but she did not map set goals:
I know that And I know that if I wanted to see it, I

it's there.
could. What I now is not to see any big plans of the
ask for
future, just to let me know what my next step this day is. That's
what I want. I want to be living with just a sense of that I am on
my right path, that each step that I take is — working in that
is
direction. And
then if I'm off, if something if I'm going the —
wrong direction on something, that I'll just let me get the sig- —
nals, let them come through. Don't let me deny them; don't let
them be shut off from me. ... So that I can then adjust, you
know, and step back on on track. —
Like others, Sara Shaw believed that growing up in an alco-
holic family, as well as her illness, kept her time perspective
close to the present. Two years ago, she tried to begin to look at
a future, while still taking one day at a time. She reflected:
I'm on a real day-to-day right now. ... It was real hard for
me ... to be able to dream, to have dreams. . . . With the sick-
ness thing, I've really during that period— — really cut off my
Time Perspectives and Time Structures m 1 93
sense of future dreams because I had

because I really didn't
to,
know if I was going to live. And me a long time.
so that took . . .
[Lately,] Bob [her fiance] would talk about something we were

going to do and it would just panic me. But I feel like I'm
. . .
kind of cautiously on a day-to-day, or kind of grounded on a day-

to-day and that's very important for me. And that is reality. And
then there are things that we can kind of tentatively make plans
for. And it's also neat that the idea of making plans totally expect-
ing to accomplish them is different for me because I realize that

with my family, plans would be made but you never knew if they
were going to happen.
Many people, of course, just live and move into the future as
itemerges. They never give it much thought. Joanne Dhakzak
described the view she had held of the future throughout her
early adulthood: "I never thought of it; I was just plodding
along." She had followed her husband around the country and
supported his career moves as a naval officer, graduate student,
professional, and Ph.D. candidate. Joanne had fit her education
and jobs into the cracks of his career choices. She tied the
meaning of her illness to finding more purpose in her life:
Ifeel aimless; so I feel like I have to — for a long time, I felt okay;
everything was fine. I was bumbling around, but it was
just
perfectly fine. But now that's bumbling and I want to have some
direction. I don't want to be sixty-five and look back and go,
"Well, gee, I've had thirty years that I didn't necessarily have to
have and I could have died. I could have been dead by twenty-
nine, thirty. I don't want to look back in regret not regret, but —
feel like I've wasted my life. It's like I got a second chance and I
want to do something with it.
Recapturing the Past
Recapturing the past means that someone hopes to resume past

pursuits —
and regain a past self. Recapturing the past means
far more than restoring lost function or lessened productivity. It
means reaffirming the significance of self, both symbolic and
actual (Davis 1979; Unruh 1983). Recapturing the past also
means being able ways one had in the

to interact with others in
past. And others may
wait and hope for a return of the ill
person's past self, which strengthens his or her desire and re-
solve to recapture the past. For years after her diagnosis of
lupus erythematosus, Kathleen Lewis's family hoped to recap-
ture their collective past. She writes:
My family and I kept taking the "old me" off the shelf, hoping
one day she might return and we could go back to our past lives.
We'd sigh and put her back on the shelf, but she lingered in our
memories and hopes, thwarting any attempts of accepting and
living in the present as it was. It was always, "Tomorrow
we'll ..." or "Remember yesterday, when ?" (1985:45)
. . .
A desire to recapture the past reflects yearning for a lost self.

That yearning results from grieving for accumulated losses
from illness. Here, the person defines losses and acknowledges
illness. Though she writes that she learned to live moment by
moment after her stroke, poet May Sarton simultaneously
longed for her past self: "Now I am frightfully lonely because I
am not my self. I can't see a friend for over a half hour without
feeling as though my mind were draining away like air rushing
from a balloon" (1988:18).
The sorrow for a past self increases when people believe that
they might not reclaim it. Even after trying to wait out illness or
treatment, regaining the past self and recapturing the past may
remain elusive. Sarton suggests this elusiveness when she
writes that "to manage such a passive waiting life for so many
—
months I have had to bury my real self and now realize that
bringing that real self back is going to be even more difficult
than it was to bury it" (1988:78).
Despite her incapacity, May Sarton's work had taken on a life
of its own. Her friends cheered and sustained her. Both work
and friends spurred her to regain her health and with it to

recapture the past. Further, she had two friends with whom to
compare herself; one struggled with depression and the other
with frailty. She remarks, "The contrast between these two
friends, so much alike in the struggle, and my snail-like exis-
tence is ridiculous. I want to be well" (1988:79).
—
—
Yearning fades if a renewed self emerges after or despite
illness.But sometimes no renewal comes, and yearning does
not fade. If so, people feel endless sorrow and depression.
Then, their nostalgia for a past self intensifies and inundates
their images of self founded within diverse involvements. As
yearning and nostalgia steadily color one image of self after
another, they become etched upon the self-concept.
8
Timemarkers and Turning
Points
I was unemployed for four months [this past winter]. . . . It's the only
time in my life I ever did not work, other than for health reasons after I
got sick. I didn't work for three months [then]. So that was, you
know . . . [devastating].
Memorial Day, was my anniversary [the second year after his heart
attack], —
which is not too far back long ago [three weeks before this
interview].
I asked, "What did the anniversary mean to you?" He said:
Oh, time for reflection again. In fact, I went on a bicycle ride. I went
half the route that I did go on when I had my heart attack. I wasn't
strong enough to go the full twenty-five to fifty miles, so I just did half.
I went around to where I had the heart attack, just to see that I could do
it. What was I feeling? I don't know —
time for reflection because a —
lot went on in my life those last two years, you know, economically,
health-wise, strain on the family, ah, so yeah —

a lot. How lucky I —
was [to survive]. . . .
Memorial Day will always mean a time of reflection to me. It always

had since Viet Nam. Now with the heart attack, more so. I shall never
forget Memorial Day.
Timemarkers and turning points. Mike Reilly marked time by

juxtaposing other major events against his heart attack. For him,
his heart attack changed everything: work, family, leisure and —
health. Three years ago at age forty- two, Mike had achieved an
enviable record as a cycling enthusiast. Although never more fit,
196
Timemarkers and Turning Points 1 97
he collapsed while taking a routine bicycle ride. In an earlier

interview, he described his heart attack, the major turning point
in his life:
They were treating me

for neck and shoulder injuries and head
injuries. Fortunately, had a helmet. And I was in St. Eugene's
I
[hospital] and they were treating me for that and in the middle of
the CAT scan, I had another heart attack and they had to pull me
out and ah, put the paddles to me to get my heart going. And
then the doctor told me I had a heart attack, and I was just
furious about that just
. . .
—
"I'm too young/' ... I was in
pretty good shape; in fact, I was almost going to enter a racing
circuit for my age group. ... A bicycle accident I could handle,
you know [it's] — broken my collarbone before,
physical I've
scraped up my legs before — no big But a heart attack seems
deal.
so final.
Two years afterwards, Mike Reilly remembered his heart at-

tack and the events preceding it with great clarity. But, he re-
membered fewer details about his hospital stay. When trying to
recall those days, he said, "Everything is all blurred to me right
now."
What makes some events timemarkers and turning points,
but not others? Which events do ill people highlight as part of
their chronologies of illness? Which events foreshadow an al-
tered self? Under which conditions do ill people believe that
images of self revealed in disturbing events are real? How do
they handle their feelings about what happened to them during
these experiences?
A timemarker places an event in a chronology. Ill people mark
time and note events, which serve as bench marks of a certain
direction (Roth 1963). Turning points, however, go beyond
bench marks. Not only does a shift in direction result, but also a
shift in self follows. Both timemarkers and turning points contrib-
ute to constructing a meaningful chronology, and with it, a life
history. As ill people search the past to understand the present,
they learn about their futures as well as create a chronicle of their
illnesses. They bracket certain experiences into distinct events
that have form and meaning. These events vary in significance
—
and intensity from telling moments to all-encompassing
episodes, the repercussions of which shape self and reverberate

throughout life.
Studying timemarkers and turning points means looking at
the past —
closely. Beyond serving as points of reference and
bench marks of change, feelings about an unsettling or unre-
solved past event cast shadows on a present self. In the last
chapter, described how ill people related to the present. In this
I
chapter, shift to the past and look at how markers and feelings
I
shape the past and influence the present.
Illness as a Timemarker
Many people use mark time and to divide periods of

illness to
their lives (Roth 1963). They celebrate certain markers as anni-
versaries to note a positive change. Markers can also be cast as
comparative anchor points for measuring illness, health and
self.
Creating a Chronology
HI people note how the time within periods of their lives

directly relates to self. Their illness chronologies render their
more comprehensible. They draw upon their chro-
experiences
them explain what happened, why they got
nologies to help
and what illness meant to them. They also
worse, or better,
draw upon medical explanations and psychological interpreta-
tions like "stress index" that hold cultural currency.
Chronically ill men and women divide their lives into periods
of illness and nonillness, crisis and quiescence, flare-ups and
remissions, rigid regimens and convalescence. Illness under-
scores and marks events, and sets boundaries between events.
For example, Mark Reinertsen developed a chronology founded
on his trials with dialysis and transplant surgery. After he re-
ceived his second transplant, he felt so much better for several
months that he defined being on dialysis as "sick time" and his
months with the transplant as "healthy time."
Tjmemarkers and Turning Points mm 199
An illness chronology seems an obvious way to relate to

like
time when sickness has usurped chunks of time, and its effects
on self have been glaring. In this case, the chronology of illness
seemingly takes on a life of its own. During continued crises or
immersion in illness, the chronology overtakes one. Illness
shoots by like a train that has left the passenger behind, run-
ning after the caboose. Here, the markers of a chronology pile
upon one another in such swift succession that they blur to-
gether. Moreover, the markers may pose such an assault on
one's sense of self that they lie beyond one's ability to take
them fully into account. But
people can symbolically or actu-
if
ally keep then they can draw sharp

their illness contained,
boundaries between their episodes of illness and self.
Establishing a chronology primarily occurs in retrospect. A
physician's questions about earlier signs and symptoms, hereto-
fore discounted, can prompt the patient to construct a chronol-
ogy. Remembering a long discounted and forgotten transitory
symptom recasts it as part of one's history. For example, a
middle-aged woman had ascertained that her first episode of
multiple sclerosis occurred ten years before her diagnosis. She
recalled:
I went blind in one eye. It was right after I'd had Robbie. And
that was probably the first time I ever noticed I really had it. . . .
I went to run, and all of a sudden it just

—
you know there —
wasn't the energy and everything that I had before wasn't there.
And that was in the summer and I think, that was like July,
maybe, and come, maybe, September is when I just all of a—
sudden this curtain started coming down over my eye. ... It
just came and went and I brushed it off and that was it.
Occasionally, an ill person discerns a pattern when no one

else has done so. Decades later, Harriet Binetti felt certain that
her first episode of MS occurred when she was in ninth grade.
When I asked her what her symptoms were, she said, "Double
vision. And I remember my mom just took me to the eye doctor
and I wore a patch and they tried to correct it with glasses. And
then one day, it just disappeared. And then I didn't have a
problem, which was double vision, until I guess early '63."
Another woman who noted her increasingly dry eyes and

intensified growing fatigue wondered if she also had Sjogren's
syndrome in addition to rheumatoid arthritis. Searching the
past helps to explain the present and to predict the future (cf.
Katovich 1987). In this way, the chronology develops form and

meaning.
These stories underscore a key point: certain events assume
more importance in retrospect than when actually experienced.
The frame of the emerging chronology gives these past events
meaning, whether decreed significant or trivial. An earlier dis-
tressing event can seem benign or even positive when juxta-
posed against recent ones. Even before her hospitalization,
seventy-nine-year-old Carobeth Laird's chronic hip pain, arthri-
tis, inexplicable incoordination, and acute illnesses had con-
fined her. In reevaluating this earlier confinement, she noted:
Ihad not felt very secure or very happy in my room in Georgia's

mobile home in Chemehuevi Valley. Now I found myself remem-
bering it wistfully. There had been at least a few of my books,
some which had been my companions for years.
of Now
. . .
lying inmy bed in Indian Hospital, remembered all these things

I
with nostalgia. Then, in spite of my fears at being left alone while

Georgia was away, I enjoyed a comparative freedom and could
look forward to a brighter future. Now it seemed unlikely I
would ever have a room that I could call my own. (1979:35-37)
When illness serves as a timemarker, people use it as a major

source of the stops, hurdles, highs, and lows that give their
lives shape and structure. Illness chronologies chart events,
specify durations, and locate places and people. They also pro-
vide windows for observing the developing self. Through their
chronologies, ill people frame experience and thus outline and
define feelings as well as physical symptoms. Subsequently,
they fill in the spaces of experience between timemarkers
(Sharron 1982).
The marker events of a chronology flow from the stance some-
one takes toward illness. For those who view illness as some-
thing to struggle against, the type and duration of the waged
battle provide the bench marks of the chronology. Here, the
Timemarkers and Turning Points 201
individual constructs a linear chronology to demonstrate prog-

ress. 1Like others, one man relished telling me, 'The doctor said,
'You'll never walk again'; [two months later] his jaw dropped a
yard when he saw me walking down the hall." Despite grave
hardships, handling illness oneself for a period of time without
burdening others serves as a timemarker to those who wish to
remain stoical. An older woman said, "I got through that bad
time and since then, I know I haven't been the same, but I got
through it without troubling my relatives or friends."
Illness chronologies are more than markers of time, they also
identify the individual and establish his or her identity. Early in
her chronology, Nancy Mairs developed identity rules about
being a person with multiple sclerosis: "Like fat people who are
expected to be jolly, cripples must bear their lot meekly and
cheerfully. A grumpy cripple isn't playing by the rules. And
much of the pressure is self-generated. Early on, I vowed that if
I had to have MS, by God I was going to do it well. This is a
class act, ladies and gentlemen. No tears, no recriminations, no

faintheartedness" (1986: 15).
As I have argued throughout the book, the markers of illness
mark self as well as time. And those markers may be seen as
positive. As one woman exclaimed, "What I've learned through
having this illness is incredible; I like me; I respect me. I have
more self-respect than I have ever had." Subsequently, an ill-
ness chronology may stand as the history of a transformed self.
—
If illness becomes special —
even precious to ill people, they
see it as a path to self-knowledge. Bench marks in an illness
chronology reveal discoveries of self as well as definitions of
relative health and illness. "That time [of illness]" takes on
intensified meaning and significance. If so, then identifying self
with those experiences follows. Other people echoed Sara
Shaw's statement: "I wouldn't trade that time [of illness] for
anything. Dealing with it made me the person I am today."
Establishing Markers
What are the bench marks of time? Why do some events

stand out forever and others blur into the past?
Markers of diagnoses, surgeries, or treatments can serve as

anniversary dates, which medical follow-ups and treatments re-
affirm. Repeated six-month checkups allow the original marker
event to take on weight as both a turning point and reference
point. Further, such anniversary dates become part of the daily
discourse among patients and families.
When did you have your heart attack?

How long do you have to go until your five-year mark (sur-
vival rate)?
It's been three years since diagnosis.
I haven't felt up to par since my surgery five years ago.
Meanings of the anniversary date are often tied to survival. 2

One doctor gave Marty Gordon a prognosis of death within
weeks. A year later, she said, "Now that I've had my year
anniversary ... I thought, 'Well, I beat it. There's a year gone
by' And that I feel a lot better than I did and that 'No big deal'
and we'll take the next year as it comes."
Certainly the diagnosis and subsequent serious episodes are
defined as markers because later events flow from them.
What else influences an individual to define an event as a
marker?
A family history of an illness can provide ready-made mark-
ers for creating comparative chronologies. Mark Reinertsen's
mother and uncle had died of the same kidney disease. Sev-
eral men who had had heart attacks compared themselves to
brothers or fathers with heart disease. Two years ago, the
doctors of a forty-three-year-old woman thought she had a
massive infection due to perforation of the colon. She re-
counted what the surgeon said: " 'Well, it's definitely not can-
cer because of your age and everything.' " When I asked her
what she knew before she had surgery, she said, "It gets foggy
as time goes on, but myself, I knew I had cancer ... I just
kind of had an intuition. Cancer is in my family. My mother's
had a mastectomy and my grandfather, her father, died of
cancer and I have a cousin who died, oh, three years ago of
colon cancer." In addition, this woman's cousin had been
about the same age when her colon cancer was diagnosed.
—
Her family history superseded the initial diagnosis of acute

infection and provided grounds for starting her chronology
before she received the official news.
The chronology of a relative's unrelated illness may locate
and pinpoint events in one's own chronology. For example,
Bessie Thompkins located marker events by remembering what
was happening to her husband at the same time. "I had the
chest pain before Harry went into the hospital that was three —
years ago." "Harry was already in St. Eugene's Hospital
before he went to the nursing home —
then I had to go into the
hospital." Similarly, Lin Bell's brother's sudden fatal heart at-
tack provided the reference point for the beginning of her chro-
nology. She recalled her first episode of angina: "I think it
was — my
brother died in '83, so it was April of '83."
let's see,
Should a hospital stay or a surgical procedure directly pre-
cede or follow diagnosis, the marker looms large. A sense of
paradox or drama surrounding the initial events strengthens
memories of them. Bessie Thompkins said, "Harry and I were
both at St. Eugene's at the same time for almost a week. Can
you imagine that?" An unexpected crisis with rapid medical
intervention provides drama long remembered, and the drama
heightens when the medical procedures are risky or if the pa-
tient's prognosis remains guarded. For example, one forty-
seven-year-old man recounted:
And my wife And it took them a

called the paramedics and. . . .
week to figureout what was wrong because it's a very rare

condition ... I found out later that it's usually misdiagnosed.
The surgeon that did the operation has done, he said something
like fifteen hundred bypass operations and this is the third one I
think he said that mine was.
It was a high risk procedure, but I didn't really have much
choice. . . . —
They told my wife that I found out later that they
didn't expect me to survive —
that they thought they may as well
try anyway.
The social consequences of a marker event sharpen the mean-

ing of the event and identify it as a turning point. Several
women attributed their broken marriages or relationships to the
strain of marker events from illness. The meaning of the marker

event thus merges with its social consequences.
The spiraling effects of an illness, in turn, can spawn social
marker events such as taking a less demanding job or retiring.
These events may mark a changed life, perhaps for an entire
family. Mike Reilly's wife had to get her first full-time job in
eighteen years, an unwelcome marker for both of them. Lin Bell
gave up a job she loved:
It was a terrific job and I was the only one trained to do it. I was
working ten and twelve hours a day, six days a week. That
started in '84. And we got this supervisor in —
he was not my
—
supervisor but he kept telling us how things were done in San
Tomas, you know, and that we were dumb and didn't know.
And I kept telling him, "I don't care how they do it down in
San Tomas, get out of my face and let me do my job." And he
just kept, just kept it up, just kept it up, 'cause he had other
people he wanted in that office. Well he finally got it. I thought,
"I don't want to fight." ... I just want a job that I go to and I
leave at work," and so I took a voluntary demotion.
Textbook descriptions of a disease process provide a set of

expected timemarkers that signal progression and place ceilings
on time. The crucial timemarker estimates death. Given the
extent to which she had been affected, Bonnie Presley believed
that lupus had foreshortened her life. A middle-aged man who
had lived with diabetes for over twenty years said:
I guess I'm rather pleasantly surprised that I've been a diabetic

for so long, with so few bad side effects and I guess the other
side of that is I'm kind of apprehensive that ah, before too long,
it's going to catch up with me. What I've read about diabe-
. . .
tes, it says complications set in after twenty years or twenty-two

years or twenty-four years. But I guess I hope that through hav-
ing to some extent done what I wanted to do, uhm, I kept myself
as healthy as I could.
An indeterminate onset obscures the chronology. Certainly

having a time limit on life encourages searching the past for
the onset of the disease. Without clear timemarkers, people

cannot compare their case to a typical one. Nancy Swenson
knew that current estimates gave her from two to twenty
years to live after the initial onset of symptoms. But when was
that? During one interview, when she described herself as sick
and depressed, she said, "I figure that I probably had this
—
when I was in Oregon [eight years before] and possibly be-
fore that —if you only live with it as long as twenty years
[maximum], I may not have many years left. Whatever time I

—
have left, I'd like it to be peaceful and serene. It's not I can't
get any peace of mind."
As Nancy Swenson' s statement implies, the quality of experi-
enced time heightens the significance of timemarkers. And
knowing that one has limited time heightens the significance of
the quality of time. Several months later, Nancy felt less de-
pressed. At that time, she looked back into the past for
timemarkers without the anguish about the present and future.
She remarked, "Sometimes I flash back: how long ago was it
when I had these first symptoms? [I'm] trying to figure out how
much you know, if I live to the max of what that says
longer,
I'm going to have. . Sometimes I think about, God, that was
. .
a sign, and that was a sign of the carcinoid, you know, but
nobody picked up on it."
Vague symptoms without a legitimizing diagnosis can give
rise to a chronology based more upon nasty encounters with
physicians than on symptoms or episodes. An older woman
challenged several doctors' assertions about her and ultimately
was refused treatment by the only specialist in town. Her chro-
nology consisted of the sequence of her hostile encounters with
physicians.
What, when, and how people mark events connected with
illness depend upon their awareness of it, other pressing con-
cerns, and their degree of attachment to it. An older man gave a
much more detailed chronology of his wife's illness than of his
own, which he discounted as rather uninteresting. But once
illness has consumed someone's interest and governs his or her
days, a response like this is common: "Why I can tell you every
little detail. I mean I have stories that could bore you to death."
Markers as Measures
When people mark time by illness, what do the markers

mean? What lies between the marked events? By comparing
views of self in illness with other views of self, one can measure
the present self. Measures can be taken of how "sick" or "well"
the person is. Similarly, marking time prospectively takes a
different cast than finding retrospective markers. Prospective
markers can focus effort, such as when someone prepares to go
back to work or aims to walk a specific distance by a projected
date. But what occurs between retrospective markers often
seems elusive, because losing one's health can occur slowly. In
these circumstances, markers emerge and measure physical
changes only when the person becomes aware of lost function.
When she was very ill, Bonnie Presley remarked, "Well, I
think about the past when, like you know, if my hand won't
turn on the knob in the shower ... or my arm is so tired I can't
brush my teeth, sure I think about 'Gosh, remember when I
"
used to be like this and that and do this and that.'
Retrospective markers can also flag the road back to health.
Thus, a prior ill self serves as the contrast for measuring present
self and marks the distance that has been covered. Mike Reilly
said:
1987 would say was the worst year of my life, economically,

I
and all that. So I'll mark time by that. You

financially, stress-wise
know, five years ago I did this. What were you doing? God, it's
been five years since my heart attack. And also, it's when things
are bad, you know, what's the worst you ever felt? I can move
back to that and, "Look what I've accomplished since that." So I
use that, try and use it from a positive point of view.
A marker event is distinct and even extraordinary. Yet mark-

ers can change. A once distinct event blurs when repeated
without change. An initial hospitalization, for example, stands
as a marker since people define it as a turning point, a vivid
symbol of change. However, if frequent subsequent hospitaliza-
tions do not produce much change, they grow routine unless, —
Timemarkers and Turning Points mm 207
of course, one hospitalization is a long-awaited evaluation at a

leading medical center (Gross 1987).
Markers are not merely reconstructions after the events. Ill
people actively construct markers and chronologies in the midst

of crisis and uncertainty as well (Roth 1963). They mark events
while immersed in illness to note improvement and to provide a
way of measuring the next hurdle. Joanne Dhakzak said, "I built
a situation to get through it and then used it as an anchor to get
through the next one." Her situations ranged from markers dur-
ing the day to major goals. For example, if she got her dogs
walked in the morning, then, she reasoned, she could get herself
to treatment that day. Similarly, with a longer timeframe: "If I
could get through radiation, then I could handle chemother-
apy. " She used the marker to measure what and how much to do
next.
Markers hold encompassing meaning if ill people believe
less
that the worst is over. Then, they treat events as markers but
refer to them as they will. They pull up parts of their pasts as
though files on a computer, catalog them, review their con-
tents, and then, perhaps, clear them from memory. 3 Joanne
Dhakzak commented, "Before, everything revolved around ill-
ness. Now I want to treat it as something I learned from, a
growth experience, something that I developed from treat it —
as a measuring —a marker."
Identifying Moments
Some timemarkers seem objective and external. In contrast,

identifyingmoments and significant events are existential.
They touch the self directly. Identifying moments are telling
moments filled with new self-images. And they are telling be-
cause they spark sudden realizations, reveal hidden images of
self, or divulge what others think.
Some identifying moments are positive. For example, an

older woman with cancer surprised and delighted an elderly
man with heart disease by saying, "The way you have handled
your illness has been such an inspiration to me; you are my role
model."
—
Yet many identifying moments astonish or demean the ill per-

son. Like the small shocks of awareness of aging (Karp 1988),
unsettling reminders of a changing self and a new identity can
emerge when one loses his or her health. An elderly woman
almost fell after using the toilet. She said, "I realized then my
days of living independently are numbered/' A man with heart
disease suddenly saw how much his heart attack had aged him.
He commented: "When I went to this exercise class with Janie
Janie Neilson — um, they had mirrors around the gymnasium
and ah, we were doing exercises, walking around the perimeter
of the gymnasium, and I looked at myself in the mirror and I
said, 'You know, I can't really believe I'm that old, to have all
these problems,' and I really felt depressed."
Practitioners often create identifying moments, sometimes
intentionally. Lin Bell recalled her first heart attack. She said,
"And then, I woke up in CCU [cardiac care unit] and there's
Janie [the cardiac rehabilitation nurse] bending over me, say-
ing, 'Congratulations for quitting smoking.' " Later, when she
was enrolled in the cardiac rehabilitation program, Lin dis-
missed the fears that other patients had. Again, Janie, her pro-
gram leader, provided several identifying moments:
When I was exercising, see, I wasn't real worried about myself

because I'd only had angioplasty. Most of these people there had
had bypasses or heart attacks and they had pacemakers and all
that. Not me, I only had angioplasty. And Janie kept telling me,
"Lin, you'd better watch out," you know. Then she knew I was
smoking again. She said, "Your second heart attack, you have a
50 percent chance of it being fatal." I said, "No sweat, Janie; I
haven't had my first one yet." And she said, "You had angio-
plasty; that is considered like a heart attack." I thought, "Well,
criminy."
Commonly, invisible illnesses evoke identifying moments be-

cause others discount people's claims to illness or accuse them
of exaggerating. Noticeable disabilities elicit a different order of
identifying moments. Even strangers make intrusive comments
or ask rude questions. Harriet Binetti remarked in disgust
about "the pity disabled people get in wheelchairs and you
Timemarkers and Turning Points hi 209
know, they're always [saying] "hi" [mimicks the condescending

tone]. You get that smile. You're walking down the street
. . .
[in her electric wheelchair], some guy stopped his car and got
out and put his hand on my shoulder and wanted to pray for
me. Yeah, it's a weird world. And they look at me as though I'm
weird."
If ill people hold strong positive views of themselves and
their conditions, they are likely to reject the negative messages
within the identifying moment. Marty Gordon, who had idio-
pathic pulmonary fibrosis, said, "People who know me well,
can hear me breathe; it's like a pant. You could tell. Every once
in a while someone will say that I'm breathing that way to get
attention. That's their denial. They aren't able to deal with it. I
just let it go; it doesn't bother me. I just say to myself, "That's
—
okay they can't deal with it; that's just their way of reacting."
In contrast, the labels stick when significant or powerful oth-
ers undermine or negate a person's taken-for-granted assump-
tions about self. These identifying moments elicit consternation
and grief. The moment escalates into an identifying crisis and,
likely, becomes a lasting significant event and turning point
(Charmaz 1980a). Like a building in a severe earthquake, the
self is shaken and wrenched from its assumed foundation. The
self now requires reconstruction, not simply reappraisal. Here,
the boundaries between an identifying moment, identifying cri-
sis, significant event, and turning point merge.
Ernest Hirsch saw himself as a psychotherapist who hap-

pened to have multiple sclerosis. He writes:
When I noticed that no patients were being assigned to me, I
made an appointment with the new went to his office

director. I
completely without suspicion, altogether unaware of the bomb

that was about to be exploded in my face. The chief of this
. . .
service, looking highly uncomfortable, said that I would not be

assigned any more patients. He explained that, because of my
might feel sorry for me, so that I could not have
illness, patients
optimal effectiveness as their therapist. This pronouncement
. . .
came altogether unexpectedly. I hadn't even vaguely thought

that anything of this sort was in the air and, truth to tell, didn't
think that anyone had given any special thought or notice to my
illness. No one hardly talked about it at all. But I found out that I
was simply to finish the psychotherapy cases that I was carrying

and that I was then to end my psychotherapeutic activities for
good and all. What had been at the center of my professional life
was no longer to be even at the periphery. I could not imagine
what my professional life, or even just my life, would be like
without doing this type of work. (1977:71-72)
Significant Events as Turning Points
Relived moments. Retold stories often evoke recurring feelings.

Significant events echo in memory. Whether validating or
wholly disrupting, a significant event reveals images of present
or possible self and evokes feelings. Thus, these events mark
time and become turning points.
A significant event stands out in memory because it has
boundaries, intensity, and emotional force. Furthermore, a
significant event captures, demarks, and intensifies feelings.
Frequently, those feelings are unhappy ones such as bewilder-
ment, humiliation, shame, betrayal, or loss. The event flames
and frames these feelings. The emotional reverberations of a
single event echo through the present and future and there-
fore, however subtly, shade thoughts and feelings about self
and alter meanings of time (cf. Denzin 1984).
Significant events transcend the actors within them and the
stage on which they occur. These events are emergent realities,
events sui generis; they cannot be reduced to component parts
(Durkheim 1951). Thus, a significant event reflects more than a
relationship or another's actions. When, where, and how the
event occurs and who participates in it contribute to the force of
the event and affect subsequent interpretations of it. Sorting
out what the event means and the "correct" feelings to hold
about it shapes self-images and self-worth.
A significant event freezes and enlarges a moment in time.
Because of inherent or potential meanings of self within the
event, people grant obdurate qualities to it. They reify it. To
them, the event supersedes past meanings and foretells future
selves.
Like Ernest Hirsch, my respondents had to make sense of

shocking, disturbing, and ambiguous events. They had to
handle their recurring feelings about the self that were reflected
in the event. How did they do it? By reliving and retelling these
events. And in doing so, they gained new perspectives on am-
biguous or distressing events and on themselves. Original
meanings of positive significant events, however, were re-
tained, as the following stories indicate.
Finding Positive Events
Some events connected with illness are positive or come to be

defined as such. People savor positive significant events while
experienced and long relive and retell them. These events en-
gender pride and may alleviate earlier shock, self-blame, or
shame. For example, a young woman had blamed herself for
her pain and other people had agreed that she should. Learn-
ing of another interpretation without self-blame was a revela-
tion to her:
I took a class in existentialism. [The professor] said, 'Tain is

. . .
the experience of having a body." Instead of it being my fault, it
was simply the experience of having a body and it didn't have to

be self-deprecating. That made a lot of sense to me. I could just
feel the pain and say, "Yeah, feel that pain, so I am alive and I
have a body," and I could go on. And from that moment
— —
forward that was a real "Aha!" period for me the disease just
cleared up — that particular
and that particular piece of infor-
class
mation as well as others changed my life a great deal.
This woman then was able to believe that she could have a life
beyond pain. My respondents spoke of other positive signifi-
cant events such as comforting another anxious patient, finish-
ing a crucial task despite being ill, or realizing that one no
longer had to face crises or deal with negative feelings seen in
another person.
These events take on significance because ill people view
them as turning points that mirror growth and resiliency of self.
In addition, these events affirm that one has taken control over
illness, rather than the converse. The positive event itself be-
comes a turning point for subsequent positive events. Goldie
Johnson's health had plummeted. Within six years, she could
only move around her living room in her electric wheelchair.
For her first seventy-two years, she had been a leader in her
lodge and church. As her disability increased, she grew more
angry and bitter. She felt cheated because she was so physically
limited. She viewed not only her dancing days as over, but also
her social life. Goldie wondered if life was worth living at all.
Her dark thoughts faded after a near-death experience recast
the present and future. When I asked her what she felt upon
being revived, she said:
I feltgood because I heard the Lord's voice. In the room where

they took me, I could see these windows like these [the picture
window facing her] and the nurse said to me, 'Turn over on your
7
shoulder/ so I was turning and saw the light coming in. I heard
a voice [saying], "You can stay. I've got work for you to do." Oh,
it was the most beautiful voice you'd ever hear. I started to fight
and I woke up. I'm glad to be back. I'm trying to figure out
. . .
what He wants me to do. . . .
I still sit here and wonder about that voice.
Goldie Johnson's daughter testified to the change in her

mother's outlook after this experience. She said, "It's like night
and day. She was so down before; she'd given up. Now she's like
she used to be." Life had a purpose again for Goldie Johnson.
Turning points occur when ill people learn that they can give
to others who suffer. Gilda Radner had a breakthrough event
when she first talked in her cancer support group. She re-
claimed her lost self and, simultaneously, learned that she
could help other members:
And then one day I opened up and said, "My name is Gilda
Radner and I am a performer by trade. When I got cancer it
appeared on the cover of the National Enquirer. They said, 'Gilda
Radner in Life-Death Struggle,' and since then everybody has
—
thought I was dead. Well, I'm not dead cancer doesn't have to
mean you die."
Everyone in the room was looking at me a little more closely. It

was as though at that moment I became Gilda Radner. I got very
funny as I told stories about going to a restaurant and seeing
someone back up against the wall because he was so frightened
to see me. "I don't know if he was upset because I was alive or
because he didn't send me a card/'
At the end of the meeting a lot of the women came up to me
asking questions like "What kind of chemo are you on?" "What
happened when your hair fell out?" And I saw that they were
looking to me for answers or leadership. I tried to help and say
what I felt. (1989: 144-145)
Past events may beand reconstructed in light of their

recast
positive consequences.The initial events surrounding an illness,
for example, had once been thought of as multiple disasters.
Later, they may become redefined as turning points toward a
more aware self and positive markers of deeper meanings and
changed involvements.
Marker events may not always stem from the person's ill-
ness, although they can be reminders of mortality. Vera
Mueller's sister died suddenly of undiagnosed heart disease at
thirty-five. Vera's shock and grief became the pivotal marker
in her life:
Cynthia's death — I cannot —

cannot begin to explain what hap-
I
pened to me in the the woman that I had never

moment . . .
talked to in my life identified herself, and she said, "Vera

. . .
dearie, I hate to be the one to tell you this, but your sister
died." And I screamed. I screamed. I was so angry. I mean it
—
was just there was never anything but pure, pure, fundamen-
tal, I don't know what the word primal anger pouring out of —
—
me over the telephone. I just I let loose with Oh! Did I ever —
let loose. And I never let go of it and then after her death, I. . .
went through the whole process of looking at my life and get-

ting with those feelings. One of the things Cynthia's death
. . .
did for me was allow me the opportunity to stand back and say,
"Wait a minute, Vera, are you somebody? Who do you think
you are? What do you believe?" And then to say, "Well, by
God, if you believe it, you'd better get on living it because you
might be the one to go next.
214 _ ILLNESS, THE SELF, AND TIME
By facing her sister's death, Vera Mueller faced herself. By

taking this stance, she transformed what had seemed a tragic,
meaningless death into the turning point that let her take a
different, positive path. She avowed:
I mean Cynthia's death is the turning point at this point. Every-
thing before that had been luck, happenstance, and swimming

around in a quagmire of confusion and lack of understanding.
And I don't blame myself for that. There is no blame to be placed
anywhere. It just was the way it was. And since that time, I have
been doing everything from the time I get up in the morning
until I go to bed at night, to put my life together.
Reliving Negative Events
Negative events are relived and, often, retold time and time
again. Crushing moments. Humiliating encounters. Betrayal.
As Ernest Hirsch's (1977) story implies, ill people can feel
crushed, humiliated, and betrayed during a single event.
Through the event, someone's assumptions about life, health,
relationships, and self can be knocked asunder. Harry Bauer
said, "I think my biggest blow was when I was told to either
retire or get my box [casket]. And that wasn't all that easy to
live with." Though ten years had passed since his retirement,
he still felt the loss of his work. He said, "I cope with it."
Events filled with shame are less likely to be retold, but per-
—
haps, more likely to be relived over and over and over. These
events call into question both bodily functioning and a compe-
tent self. Hence, evident impotence, incontinence, or memory
lapse spawn long remembered shame. Ann Rorty's episodic
bowel incontinence caused several nightmarish incidents:
I had Levi's on and I had a

little bit of an accident before I got off
the bus. So as soon as got into Green's [drugstore], I had to run

I
back to the bathroom. I had to sit in there and clean myself up.
Used a whole bunch of toilet paper and of course if someone
wanted in [raises hands to indicate, "What could I do?"].
. . .
And then I was going to do some shopping but all I did was go
—5
over and get my drugs and split as fast as I could. And I was
shaking. I was torn apart.
Shame lasts. As
Izard (1977) notes, shame involves a height-
ened consciousness of self and implies failure. It strips away
self-respect. The person feels reduced and ridiculed (cf. Lewis
1971). When shame touches a shaky self, it can encompass the
self and paralyze feeling. 4 Under these conditions, shame re-
flects a fundamental uncertainty about both self-definition and
self-worth. And that uncertainty is precisely what having seri-
ous chronic illness and disability can evoke (Brody 1987). Conse-
quently, significant events founded in shame echo for months
and years after.
In contrast, shocking events that threaten loss of control or
life remembered, but they lose intensity over time
are long
particularly one lives. At fifty-eight, Marty Gordon had been
if
hospitalized for extensive tests. Eight months later, she told

this story:
He came in to tell me, "Uh, it didn't look good and

[the doctor]
that this —
was a could be a very rapidly" and it appeared that —
mine was really going rapidly and it might be about six weeks.
Whoa! That blew my mind. It really did. And I think again, in
hindsight, he did not do it right but he was the statistician, it —
wasn't Dr. Schultz [her rheumatologist]. Right after that I'm a —
Catholic —
right after that, a poor little volunteer lady came in
and [said], "Mrs. Gordon?" And the doctor had said, "Mrs. Gor-
don" "Yeah, OK." And then he told me. She said, "I'm from St.
Mary's Church." I said, "Jesus, Mary, and Joseph, they've got the
funeral already." And it really just then I began to see humor in —
it, but I was scared. And I think that night was my biggest
night. . . .
I had my cry. I read a chapter [of Love, Medicine, and Miracles].

And I flipped on Joan Rivers and was hysterical [with laugh-
. . .
ter]. All by myself. And I think that this was the point when [I —
decided], "If this going to happen OK, but I'm not going to let
is
it happen." And I think probably that was the turning point

. . .
when I said I wouldn't accept it. You know, I will not accept that
uhm, death sentence, or whatever you want to call it. And ah, I
think since then I've been going uphill instead of downhill.
Progressive loss of control can turn an otherwise annoying

but inconsequential incident into a significant event and a turn-
ing point in stance and action. Christine Danforth sought a
physician who could alleviate her discomfort. However, she
could ill-afford the money that her search cost since her low-
paying jobs did not provide health insurance. She went to four
different physicians, each of whom charged her hefty initial
fees and ordered complete and costly X-rays and lab tests. Her
story reveals how the meaning of a significant event builds on
past events:
I would go in for the second visit and they would [each] say,
"Yes, you have lupus, what do you want me to do?" And I
would say, "I want you to do something. I'm not comfortable,
something's wrong." They would never tell me what to do. . . .
I called and talked to her [the fifth doctor] on the phone and I
said [that] I've been diagnosed with lupus, and I said, "I want
you to tell me on the phone if you can't help me; I don't want to
waste my time, my money, and your time." And she said, "Oh,
no," you know, "I have lupus patients, I can help you." And I
said, "OK fine." I went in for a visit. It was $90. She said, "I
need you to have these tests taken." And I said, "I just had all
of those done two weeks ago." I said, "Can't you use those?"
"No, I need a new set." I said, "But these are only two weeks
old." And she said, "No, I need them again." So I went in and I
had them all taken again, which was another couple hundred
dollars. . . .
I I went back to her for my second time after

had no insurance.
she got the results back and maybe she had a bad day and I had a
bad day, but I walked in and she said, "Yes, you have lupus,
what do you want me to do?" And I blew [up]. I just came
—
unglued. I just I came unglued. And she said, "Well, that's
your problem, right there; it's your attitude." And I just said,
"Attitude, hell lady; you don't know what attitude is." And she
was you know, the fifth one down the line and I was just
like,
furious.So she said, "Well, I don't know what you want me to do
—
or what you expect me to do?" and I just nothing, you know,
and I walked out and she said, "Well, you make an appointment
on your way." And I didn't and I left. And she called me the next
day at work and said, "Well, I see you didn't make an appoint-
ment." And I said, "It's useless, you know. If you feel my prob-
lem is my attitude, then there's no use even to continue it." So I
never went back.
The culminating sense of betrayal, frustration, anger, and

loss of control that ChristineDanforth felt was echoed in other
men's and women's stories. Loss of control alone can cause ill
people to relive and retell the event because it can elicit such
profound questions. Loss of control increases when someone
already feels a lack of control in key relationships. Christine
had tried to exert some control over her medical care. This last
medical encounter not only echoed her lack of control in all the
previous encounters, but also symbolized her lack of control
over her care and her health. A sense of loss of control intensi-
fies when ill people believe that a conceivably unrelated event
actually turns on their being ill. Tina Reidel retold this story
several times:
And the worst thing that ever happened. . They [her lover
. .
and his son] just took my stuff [to store it] and threw it in the
car and went over to my house . that I'd rented out to the
. .
tenants. . . . When I'd try to put the key in the door to my

house none of the keys fit and we couldn't get into the
. . .
house. So Jim [her lover] said that he was going to sit there
until someone came home. And he had a real asthma attack
from the old moldy stuff. So I got hysterical . . . and I phone up
his [Jim's] daughter-in-law and [told her where the tenant
worked] and I said, "Get the key from him," so she went
. . .
out and he wouldn't give the key to her and ah, he told her his
girlfriend's address and I could get the key from her. This
. . .
was so humiliating; I'd never met this woman before; she had a
key to my house. And I didn't have a key to my own house and
so I — like everything was out of control. And we just took all
this stuff and threw it into the basement. It's like a total loss . . .
of control. Because of the arthritis, I couldn't deal with anything [em-

phasis mine].
I just think these people really took advantage of me, you
—
know, like his son Jim's son and the tenants in my house, —
—
and everyone like I had no power and no control or anything
and that was because of the arthritis, because it was so over-
whelming, just the arthritis, just to deal with my own body.
218™ ILLNESS, THE SELF, AND TIME
For Tina Reidel, loss of control of her health spread to loss of
control of herlife. To others, loss of identity within the events
spreads to an identifying crisis that lasts. Still evincing sorrow,

loss, shame, and betrayal after eight years, a young woman
revealed that a previous stepfather had taunted her about her
incoordination (Charmaz 1973; 1980). His taunts culminated in
the identifying crisis that she relived and retold as we talked.
My held notes state:
With just the mention of the stepfather [she] became visibly more
upset. Her facial grimacing increased as did her extraneous move-
ments. She said, "My brother was married by then and he
thought I should have it [a dwindling inheritance from their
father] for the car since I had such a hard time at home." By this
time she was close to breaking down and her movements were
—
even more uncontrolled. "My stepfather didn't like me he was
always making fun of my coordination." I asked how long the
family had lived with her stepfather. She said (while reaching a
height of grimacing and extraneous movements), "He tried to
strangle me. I haven't seen him since." (Charmaz 1973: 66)
As she retold the event, she relived the same feelings she had
experienced eight years before. Her emotions remained tied to
definitions of self experienced in the event, but not to her stepfa-
ther, whom she had dismissed. Her humiliation and shame
resulted in self-doubt and low self-esteem and had remained
with her for eight years. The event evoked "feeling reminders"
(Hochschild 1979). In her eyes and also, she believed, in the
eyes of any reasonable human being, her present self still re-
mained a diminished self.
Here, present experience and sense of self reflect the feelings
founded in a past self-image. The distance from past to present
shrinks as the past flashes into the present (Goffman 1963;
Scheler 1961). The person relives the emotions of the past. Con-
tinued reexperiencing of the original emotion etches it deeper
into the structure of the self (Scheler 1961). Further, a dramatic
event that first elicits correct "social" responses, such as shock
or anger, over time may be transformed into a psychological
event dredged up in memory with haunting "personal" emo-
tions such as grief or shame.
In the story above, the woman believed that the meaning of

the event was clear. In contrast, other ill people relived and
retold an event to self and others to establish their stance on it.
They told it another "take" on its meaning. The origi-

to receive
nal event raised identity questions that long remained unre-
solved. Consequently, by telling and retelling, they develop,
solidify, and reify a stance on the event, on themselves in the
event, and on their future selves. Sara Shaw explained, "In the
telling and retelling each time, I gain perspectives and under-
stand more fully what happened during that time. That helps
me decide what to do from here." Ultimately, then, telling and
retelling can help to gain closure on the event.
The self-images mirrored in the event demand serious
thought. Even though the looking-glass self (Cooley 1902)
might reflect a "distorted" image, conceivably a shocking one,
it foretells a possible self.
Relived and retold events flood consciousness, shape views,
and provide a frame for juxtaposing present events, feelings,
and meanings. No friends visited Mark Reinertsen during his
first transplant surgery, which saddened him. In subsequent
months, he made detailed plans to ensure that friends would

be there during his second transplant attempt. His strategies
failed. After the second transplant surgery, he disclosed:
I any people that I cared about come visit me while I

didn't have
was in the hospital, any of my friends up here. And I. . .
thought about that and I said, "Well, OK, it's a long drive and
some people don't like to go to hospitals." But I didn't receive
letters from them, I didn't receive phone calls from them. . . .
Found out afterwards that most of them did know. The men in
my Men Against Violence group, none of them. And what hap-
pened is the day that I got called, I phoned one of them and told
him, "Let the word out that I'd like to hear from people while I'm
down there." And he didn't.
Retelling allows people to discover nuances within the event,

to draw them out, and to scrutinize them. Because retelling
leads to deciding on a view of reality, it shapes actions and
emotions.
111 people may hold seemingly contradictory stances on the

event. They may feelangry, yet simultaneously still feel at-
tached to the event. It marks the beginning of their present
selves. Afterwards, these people take pride in handling an ear-
lier negative event successfully. They gain positive continuity of
self over time (cf. Marris 1974). By examining the past, they
resolve problems within it (cf. Marshall 1980; Strauss 1964).
Sometimes, they look back in awe at their own courage and
strength. Facing the event can result in revelations about them-
selves and their lives. Mark Reinertsen discovered that han-
dling his harrowing experiences with illness reduced his fear
and dread:
Experiencing illness is never as bad as it seems. Never as bad as it

—
seems. Uh, I I would say, "oh, my God, this is terrible. And
,,
then in the meantime, someone would come along, and he'd be

ten times worse and, oh see? And not just in that sense, but also
in the sense that I can always go around and find someone else
who's having to struggle too and even people who are healthy
have struggles. And it is important not to get caught up in that
melodrama.
Present Emotions and a Past Self
Reliving and can lead to experienc-

retelling significant events
ing present emotions through the images, judgments, and ap-
praisals of self implied or proclaimed in the past event. Here,
past views of self circumscribe and define present feelings. Pres-
ent and future become melded with the past. As Cooley (1902)
observed, sentiments and feelings form foundations for the self
and also result in measures of self-esteem. Retelling the event
becomes a means of sorting, defining, and clarifying old senti-
ments that constitute the self. Hence, an ill person may do
// ,,
considerable emotion-work (Hochschild 1979) to understand
present feelings in relation to a past self.
A person with an already fragile self-concept likely accepts
negative judgments and images of self revealed in a significant
event. Then, the event raises feelings that merge with self
(Denzin 1980). The questions that arose in the event pervade

present self and feelings. To illustrate: a woman discovered that
her physician, whom she adored, believed that she was malin-
gering. Feeling reduced in his eyes prompted a tearful, tense
encounter, which became a turning point. For three years after,
she discounted her symptoms saying to herself, "I'm just over-
reacting." When symptoms worsen, but the meanings of the
earlier event last, ill people ask questions like: "Did I bring this
episode on myself?" "Do I want to be sick?" "I wouldn't have it,
would I, if my head was in a better place?"
When an earlier significant event reverberates in these ways,
people remain in the past, in past emotions and relationships,
though chronological time moves on. They come to define emo-
tions and meanings of the past as "true" and "real." And then,
this self-image reflected by the past becomes their "real" self
(cf. Turner 1976).
As Denzin (1984) notes, people with dominant negative emo-
tions remain frozen in the present as they resurrect the past.
Yet, these ill people may not have always dwelt on negative
feelings. The becomes the turning point when
significant event
their feelings shifted. Initially surreal, shocking events become
plausible or even "true." For example, a young woman retold
an encounter with a psychiatric resident during her hospital
stay:
If my boyfriend came and left and I was in tears, he immediately

shows up like: young doctor enter stage left. It was horrible. . . .
He felt I had been coming on to him sexually and, therefore, he

wanted to refer me to someone else. ... I mean I was not sexu-
ally attracted to him. But I also remember that I didn't argue with
him. You know, if it were me today I would just say something
obscene to him or something . that it was definitely his prob-
. .
lem, and he might want to take a look at it. ..He was a profes-
.
sional who definitely blew it. Even though / knew in my heart

that I was not coming on to him sexually ... I was in such a bad
place with myself that I thought, "Well, maybe I am, maybe I am,
I don't know it." But — I mean I know myself well enough now to
know that if you don't think you are and you're not attracted to a
person, that you are not. You know, it's simply that. But nothing
—
was very simple to me then and I figured well here he was, a
professional — he should know. He's probably right. So that I
think he did me a lot of damage in that case.
At that time, she had viewed her illness as one more failure,
culminating in this doctor's pronouncements. Hence, his defini-
tion of her feelings became difficult for her to contradict. It took
years for her to counter those feelings of failure and to reestab-
lish positive feelings about self. In effect, the subjective duration
of the event and the negative feelings lengthen and supersede
other concerns.
Such events weigh on an ill person's mind like a prison sen-
tence on a defendant who had expected acquittal. The more
isolated, lonely, inactive, and dependent someone is, the more
influence these events have, particularly when powerful or inti-
mate others suggest the "proper" self-images and emotions for
the ill person to have. One astute physician observed that his
elderly patients took his offhand, casual, or flippant remarks as
absolute authority and a direct reflection upon them.
When facing ambiguity, power plays an especially important
role in feeling and defining emotions (Kemper 1978). Implicit or
explicit feeling directives from powerful others provide frame-
works for "understanding" and experiencing self and situation,
even when these frameworks demean or devalue oneself.
Many ill people do not know what to feel. Frequently, their
experiences are ambiguous and they face them without allies.
Ill people experiment with both their feelings and actions (Tavris
1982). And, their feelings are often mixed. For example, some-
one may simultaneously feel fear about the prognosis, anger
about incomplete information, self-pity for being ill, envy to-
ward those who are not, inadequate for being dependent, and
gratitude for receiving care. Which feeling becomes defined as
the overriding, defining emotion in an event depends on the
person's vulnerability, the intensity of the experience, the rela-
tive power of people who control it, and the meanings that the
person attributes to others. Later, an ill individual, especially
with the help of others, may define one emotion as his or her
"true" feeling about the entire event.
Significant events frequently elicit past feelings and doubts.
For those respondents who blamed themselves for their ill-
nesses and, moreover, for earlier problems in their lives, the

significant event takes on ominous proportions. It "reflects"
and magnifies all prior failings. Sara Shaw had ruminated about
why her mother hadn't visited her very often when she was
immersed in illness. In an interview three years after that pe-
riod, she said, "I felt like it must be my —it must be something
wrong with me, or it must be my fault that my own family

didn't even want to deal with me, you know, when I was dy-
ing. So I felt like, you know, I felt real guilty, like I must be real
bad, or I must have done something real bad for my mother,
like, to shun me."
Sara Shaw's emotions remained anchored in the events of the
past. As a result, her private self remained in a past where all
her doubts concerning self-worth continually reemerged, even
though she had developed a confident professional self.
After years of self-blame and guilt, followed by sadness and
anger, Sara Shaw felt afraid to trust others. When she discussed
her ambivalance about finding someone to love, she discovered
that her emotions remained tied to the past. During our conver-
sation, she suddenly realized that she had worked on improv-
ing everything but her emotions:
No wonder! Sara, [to herself] no wonder. I want to like people

but I am so scared to. Like right now I feel like I want to cry. ... I
never would have thought that this [trust] was a part of the
—
whole thing of being sick, I never would have thought it I was
so determined — once that I [had] decided I was going to live
regardless of anybody else or anything else. Then I thought I'd
hit most of the bases and uh, this just threw me for a loop to
discover this [that she had not dealt with her feelings about
intimacy and trust].
Sara Shaw's remarks suggest the elusive nature of defining

and managing feelings resulting from the significant event. She
was aware of hurt, anger, loss, and betrayal during the event
and clearly aware of the event itself. She also knew how to
manage her life afterwards in order to have more control over
it. Yet, the crucial area of intimacy had remained hidden and
elusive to her for over five years.

Unless people redefine or transform their feelings about a

significant event that diminished them, they can remain tied to
meanings and sentiments of these past events. Even if their
health greatly improves, these people retain a crucial link to a
past period of illness, which the event marks and symbolizes.
Past, present, and future become inextricably linked in their
hidden feelings, although the past may be left behind in other,
more visible, parts of their lives.
Transcending Past Emotions
Transcending the negative emotions of past events can occur

implicitly if people can develop new lives. New social worlds
offer chances for new self-images. New friends or lovers may
buttress an emerging sense of worth. Achievement at school or
work provides "evidence" for redefining feelings about self,
such as a prior conviction that one cannot function.
Usually it takes months or years to transcend low self-esteem
symbolized in emotions about a significant event, especially
when these emotions have melded with the self-concept. If this
happens, later single "successes" do not wield as much power
over self-definition as one earlier negative significant event.
Rather, it takes many successes, and much evidence of positive
value, before one can discard earlier negative feelings and shift
views of self. Although transcending the emotions of the past
usually occurs imperceptibly, some people redefine "correct"
emotions and eventually reject the feeling directives in the sig-
nificant event.
When people reject feeling directives, they refuse to allow
them to merge wholly with their self-concepts. If they have
power or disregard the other's power, they may try to impose a
view of reality and to influence others' actions.
To do so, they reopen the earlier event and ask others to reap-
praise it. An ill person may then demand that others relive it as
he or she has relived it in haunting memories. Reexamining the

original event can raise new questions and challenge earlier
moral meanings. With these questions, anchors to the past
loosen and new possibilities for the present and future arise. For
example, when comes to believe that anger, indigna-

a person
tion, or amusement might be more appropriate emotional re-
sponses to an earlier event than shame or resignation, he or she
has also challenged the dictates of earlier moral meanings.
When Sara Shaw began to reject her earlier emotional align-
ment with the events of five years before, she confronted her
family about them. She recounted the tense family scene in
these words:
I got everybody together and sat down and I just got hysterical,
like I just started crying a whole lot, "Where were
and I just said,
you guys?" [when she was seriously ill], you know, "Why
weren't you there? What was going on with all of you?" And I
told them that I needed to know this, if I was going to ... be a
part of the family, that I needed to know what happened during
that time with them and why they weren't there when I got . . .
to the point where I didn't know if I was going to be able to take

care of myself. The doctor started saying [then], "Do you have
any family? Where are they? We have to contact them now." . . .
And so I sat down and I wrote a letter to my mom and I said, "In
the event that I get to the point where I cannot take care of
myself, can I come home?" And she wrote me a letter back and
she said, "No, you can't come home, because you don't get
along with your father."
Sara Shaw forced her family to deal with her present feelings
about the past event, whether or not they dealt with the past
event itself. Through reopening the past, she gained more infor-
mation and insight about it. She discovered that her brother
actually had not known how sick she had been. She learned
more about her position in the family and simultaneously
found a possibility of recasting her role within it. She created a
scene in order to teach her family to accept her views of her
moral rights and to acknowledge the legitimacy of her emo-
tional response to the past event. Doing so strengthened her
claims to reinterpreting the "true" i.e., unjust —
meaning of —
the past. During the ensuing confrontation, Sara's sister tried to
Sara's guilt and self-blame for causing a fuss and for hurt-
elicit
ing their mother. But Sara refused to accept her sister's defini-
tions of "correct" feelings. Instead, she felt that the balance of
suffering had been

righted. She recounted that she told her
paid my dues, you know, I went through enough
sister, "I've
pain, and go ahead, give me all the guilt you want."
Momentarily, at least, Sara Shaw controlled interaction, and
probably the emotional climate, within her family (Becker
1975). Shame, sorrow, and loss from the past were transformed
into anger and indignation. Similarly, what had been an obses-
sive review became the source of moral action and legitimate
redress. These feelings and meanings reflect a self now less
vulnerable to others' judgments (Kemper 1978; Tavris 1982).
Paradoxically, such an appraisal of the significant event can
itself become another significant event, although in Sara's case,
a positive one.
Once committed to a revised version of the significant event,
the person may and ac-
insist that other participants' feelings
from these new definitions (Becker
tions should logically flow
1960) and events. Vera Mueller assumed her son owed her a
modicum of good behavior. Although she had never told him
of the seriousness of her condition, she revealed it to him when
his violent threats toward other children thoroughly provoked
her. She explained:
Ididn't put my life on the line for him to act like a little shithead.
His eyes popped out [when she said that]. He said, "What do
you mean?" I said, "They told me to have an abortion, I told
them to go to hell." [She now recounts her son's question]: "Why
did you tell them that?" [She responded to him]: "Because they
told me that it would kill me for you to be born. I told them they
were wrong. I fought for you to be brought into this world before
you were even here. How dare you turn around and do some-
thing that stupid?"
These two stories reflect different uses of reopening the event

that occur along the same continuum. In the first story, Sara
Shaw raised questions about the earlier event. Reopening it
meant discovering what had happened, checking impressions,

and deciding which feelings to hold about family. As a result,
one may redefine large slices of time. In the second story, how-
ever, the meaning of the significant event remained firm. No
Timemarkers and Turning Points m 227
clarifying or reexamining needed here. Instead, reopening the
event was used to exact specific actions from another individual.
The effects of a past event can reach far beyond what other
participants had ever intended. The shaping of self continues in
the mind of the man or woman who relives, and reevaluates,
the earlier event. In short, the event haunts this person because
of the inner conversation he or she has with self about self (cf.
Mead 1934; Strauss 1964). If redefining self and feeling occurs,
the person may then create guidelines to avoid being cast into a
surreal swirl of events over which he or she has no control.
Significant events also become important sources of compari-
son and contrast for self. Someone may accept the negative
reflections of self given in the past event as towhom he or she

was then,but not of the self of the present and future. Here, a
significant event loses emotional power and subsequently be-
comes defined as a marker of the past, rather than a determin-
ing force in the present and future.
9
The Self in Time
Moment to moment. . . most comfortable way of living

. That is the
and the only way for me. There are move away from that and I
times I
get lost, but, by and large, I come back to that. It just seems to be the
simplest, the least wear and tear. I mean it's like spending a whole
bunch of time in the past or future just wears me out, because the
future is such an unknown that taking it pretty much as it comes up —
J mean it's like I do make some plans but I find that that takes my
energy from taking care of what's going on now. You can't give fully to
what's going on now.
I asked, "and the past?"
The past is nice to visit once in awhile. It's sort of I can go back —
and get nurtured when I visit the past, mostly. J mean there are some
pretty nasty spots in the past, too, but by and large, it's nurturing
stuff that I remember anyway. So, we remember the good stuff; we
don't remember the bad stuff.
Moving from moment to moment. Being in the moment. Try-

ing to keep pastand future from consuming him. Mark Reinert-
sen, at thirty-seven, has long attempted to be in the present.
His renal failure and numerous debilitating complications span
fourteen years. During the past five years, he had to cope with
the deaths of the aunt and uncle who raised him, the loss of a
lover, and the rigors of graduate school. Though Mark made
schedules and his plans looked to the future, his self-concept
remained in the present. By being in the present, he felt that he
focused upon immediate events and intensified his involve-
ment in them. Otherwise, his illness with its spiraling complica-
228
The Self in Time™ 229
tions could overwhelm and devour him, leaving little of his

preferred self intact.
Mark's self-concept became tied to the present; he saw and
experienced himself as real, i.e., authentic, when he lived in
the present. For him, leaving the past alone allowed him to
attend to the present and enabled him to make his real, or
fundamental, self an actual self. Being in the past jarred his real
self, for he felt pressured to keep his thoughts, feelings, and
actions — —
and therefore his self-concept in the present.
Experiencing chronic illness may result in ill people's self-
concepts becoming tied to the past, present, or future. Thus,
time plays a central, albeit hidden, role in shaping self-concept.
A once certain self-concept can become elusive and may shift
and change through time, like a kaleidoscope that recombines
and restructures pieces of the past, present, and future. New
events result in recombining past, present, and projected fu-
ture selves in different, shifting ways.
All the ways of experiencing time that I have described
throughout the book influence locating the self in a particular
timeframe. A questionable future can prompt people who an-
chored themselves to the future to seek a valued self in the
present. When dull days replace vibrant years, the past can
offer solace and refuge. Being disrupted by illness can spur the
ill person to look beyond the present and locate the self in a
brighter future.
How are chronically ill people's self-concepts imbedded in
timeframes of past, present, and future? In which ways do time
structures and time perspectives foster tying the self to a spe-
cific timeframe? Under which conditions do ill people's real
selves become situated in specific timeframes? When do they

view their experiences as revealing aspects of their past, pres-
ent, or future real selves? How might prior timeframes for locat-
ing the self-concept change or continue?
An irretrievable past, an unsettling present, and an irrevoca-
bly changed future alter an individual's views of self. These
altered views reflect shifts in the relatively stable foundation of
the self-concept; the structure of changes.
it
Significant events and turning points produce images of self

that illuminate the direction and content of the emerging self.
Living one day at a time forces a once future-oriented person to

think of self in relation to time differently. Although they do so
in often invisible or implicit ways, people identify with some
periods of time, events, and experiences but not with others.
And their ways of viewing and relating to time affect their
emerging selves. Select times, events, and experiences then
become anchored to the self. In short the self is situated in time
as well as in relationships.
To date, sociologists have largely viewed the self-concept as
imbedded in and emerging from relationships. Granted, rela-
tionships are pivotal and influence a person's emerging self-
concept. Yet those relationships develop during specific periods
in a person's life, which may be circumscribed and time-
limited. Family, friends, health professionals, and helpers ob-
serve, share, contribute to or create key events or periods of
time in an person's life. Relationships not only exist within
ill
social structures, they exist within socially constructed times.

Goffman (1959), Turner (1976), Turner and Gordon (1981),
and more recently, Denzin (1984; 1986) all point a way to study-
ing what people take as their real selves. Turner argues that
people do not view all their behaviors, attributes, or actions as
reflecting their real selves (see Chapter 2 endnote 2). For Tur-
ner, the self consists of a relatively stable, organized core of
qualities beyond self-esteem or idealized self-images through
which people define and locate themselves. As such, this core
of qualities becomes an object that does not simply replicate all
that one does, says, or feels. Hence, the self-concept provides
meanings that people attribute to themselves and unifies subjec-
tive experience over time (Charmaz 1981; Denzin 1986; Turner
1976).
Clearly, not all events, actions, periods of time, or even attri-
and meld with self. But some do. I explore both

butes, stick to
the coercive conditions and autonomous choices that foster
melding the self to a particular time frame. Further, ill people's
self-concepts may shift their locations in the past, present, or
future at different points in their illnesses. For example, a per-
son has been tied to the past or future may come to live in
who
the presentand to see self as situated within it.
Melbin (1987) argues that time is a container for activities and
—
The Self in Time 231
events. In an analogous way, time serves as a container for

situating the self, although both process and product remain
implicit. Assumptions about time lead people to act as if the
past, present, and future were containers, or timeframes, that
bounded their self-concepts. I treat these timeframes as largely
analytically distinct for clarity, although, typically, they are expe-
rientially mixed. Though some people locate themselves rather
firmly in the past, present, or future, they also experience a
past, present, and future and must attend to
sliding together
these other timeframes, in whatever way
they conceive them. I
note this fluidity of time to avoid freezing people in one
timeframe.
The Self in the Past
The past serves as a timeframe to contain varied events and to

reflect diverse selves. Whether people slip into locating them-
selves in the past or actively seek to tie themselves to it de-
pends upon the form of the past that they have experienced
and remember. Thus, to discover how and why people come to
situate their self-concepts in the past necessitates looking at
their meanings about the past. What forms does the past take?
The Past as a Tangled Web
When people view their past as tangled, they try to locate

themselves in the actions and events that formed it. They feel
caught and overwhelmed by their past. They seek to explain
and account for the events of the past that have brought them
into the present (Lopata 1986). As one elderly man reflected, "I
live in the past too much; I keep trying to figure out what
happened." Living in the past pulls people into it steadily —
stealthily without their full awareness. They wonder if they
contributed to past events. If so, they seek more than under-
standing these events. They feel compelled to come to some
resolution or decision about them. Questions and feelings
about individual responsibility tie people to the past. "How did

happen?" "Did I do it to myself?" "Could I have handled
it all
my illness better?" "What if I had had less stress?" "What if I
had known my diagnosis earlier?"

Here, the "what if 's?" dive into the past, rather than leap into
the future. By asking such questions, ill people begin to unravel
their past. They study the past to understand and explain their
present and to predict their future.
An overriding reason for striving to understand one's past is
to avoid repeating it. In this case, the "what if 's?" about the past
lead directly to the future. "What if I caused it? Then I can change
me and get healthier." Past and future loom large. The present
narrows and feels tenuous. Being catapulted from a minor dis-
ability to total paralysis left Harriet Binetti dazed and bewil-
dered. She studied the past because she questioned why her
condition worsened so rapidly. She felt caught in a web of the
past. Eight years later, she still asked, "How did it happen? Did
the divorce trigger it?" She observed that before her divorce:
When I'd have flare-ups and all, I always just came back from it,
you know, pretty well and even when I had problems, there
. . .
was somebody who took care of everything. When I got my

. . .
divorce, within six months, I had a cane and I had two bad flare-
ups . everything was on my shoulders, as far as the check-
. .
book and all and, I don't know, I guess being alone. Being alone
as far as security, I'm speaking. And it was just a lot for me to
handle. Susan [her daughter] was fifteen then. Robert [her son]
used to run away.
Harriet Binetti also studied the past to search for ways to

—
avoid her earlier fate nursing home placement. Most of her
lump-sum divorce settlement went to a lawyer to defend her
son against criminal charges. When she had no money, she
had no choice in living arrangements. Harriet had struggled to
survive in the three nursing homes through which she was
shuffled. She looked back at those struggles in dread that she
might face them again. Her fear of being put in another nurs-
ing home intensified when she thought of her frail, elderly
mother, who might be relegated to a similar fate. For Harriet,
The Self in Time — 233
a nursing home symbolized her worst possible future. She
tried to live one day but her fears of having to relive
at a time,
her past pulled her back into that past. She attempted to disen-
tangle certain strands of her past and tried to cut others that
might ensnare her again. But paradoxically, her efforts kept
her tied to the past.
The Familiar Past and Inexplicable Present
The past feels familiar when it is predictable, understand-

able,and close to self. This past does not require sorting; it
seems self-evident. People allude to a familiar past most often
when that past was unencumbered by illness. However, as I
have suggested, a past in illness can also take on familiarity and
predictablity.
Locating oneself in the past occurs when 1) people sense a
radical disjuncture between a familiar past and the seemingly
inexplicable or alien present, and 2) the self revealed in the
present isuntenable or unacceptable. These people feel the
changes. Telling signs remind them. Numerous people noted
declining mental faculties and failing bodies. Certainly, alcohol-
ism, memory loss, and medication side-effects can make the
present inexplicable and the past, by contrast, both compre-
hensible and comfortable (Feil 1985). But so can loneliness,
depression, and exhaustion. In the aftermath of her stroke,
May Sarton writes: "And [before] I felt so safe and well. Now
I've been knocked down — and that is what is difficult to be —
suddenly old. ... A radical change of life" (1988:44). Under
such conditions, people feel trapped in an alien present while
their self-concepts reside in a familiar past. Sarton also com-
ments, "I feel so cut off from what was once a self" (1988:97).
When the present marks a radical change, the past provides
more than the security of familiarity, it offers a foundation for
reconstructing an altered, if diminished, self-concept. In this
sense, situating the self in the past can help one adapt to the
present and shape a future. Taking strength from the past as-
suages fear, reduces shock, and overcomes disappointment. As
a middle-aged man reflected:
There's a past that you remember and there's a past that's reality.
Then there's a past that's — much reality as ah, oh
that's as
[searching for words], how could you say that? Remember see-
ing a scene, or a moment from childhood, for instance, that is
particularly poignant. I guess I'm sure everyone has you know,
memories, pictures or something. They're more than pictures,
they're feelings and they're places to which you orient yourself in
your life. And when, when you think about it, you think, you
just think, who am I? What are my values? And those are the
kind of places you go back to to reground yourself.
Locating oneself in the familiar past can take other forms. As I

imply in Chapter 4, insulating self in illness routines can result in
continuing to locate self in a past illness should health vastly
improve (cf. Sacks 1984). In contrast, when the past illness
evokes terror, people may remain in it without embracing sick-
ness itself. Here, the past takes on an ominous, but unshakable,
familiarity. Further, the present seems uncertain and unfathom-
able when doubts arise about a lasting recovery or about having
a future at all. For example, Joanne Dhakzak's images of herself
remained tied to her past with Hodgkin's lymphoma: "I'm too
much in the past; I don't let myself move on and really create a
life. It's like if I do anything important, I may lose it because the
cancer might come back. So I don't let myself do anything; I

don't give my life direction. You can waste life going through life
like that."
Though her interests led toward pursuing a professional de-
gree, she wondered if just making the commitment to attend
graduate school would hasten another episode. She also wor-
ried that the stress of school and a job might make her sick
again. Her feelings of being stuck in a dark past increased when
she compared her life with her husband who sped into a bright
future with his blossoming career. Meanwhile, her self-concept
remained situated in a gnawing, frightening past, in which she
felt inextricably trapped.
The Reconstructed Past
The reconstructed past, in contrast, typically shines bright

with happiness, fullness, and vibrancy when viewed against the
The Self in Time m 235
lived present. Here, ill people reject being identified by their
lived present. Subsequently, they see their preferred selves
within their reconstructed memories and begin to locate them-
selves in the past. As Maines, Sugrue, and Katovich (1983)
observe, present realities shape what people remember. Recol-
lections of possessing much greater vitality and, moreover,
validity spur reconstructing and reliving the past. The compara-
tive value of a past self further increases when a dark or empty
future looms ahead. In short, a past self takes on fresh and
expanded meaning when reconstructed and observed from the
vantage point of the present. When actually experienced, how-
ever, the past may not have held such august meanings. But
comparisons of past and present self make the former self seem
unquestionably preferable.
Isolation and immersion in illness routines can foster situat-
ing oneself in the past because the present may lack a sense of
being really lived. In this situation, it is almost as if people
observe rather than live their own lives. For people who had
predicated their self-concepts on action and productivity, time
stands still, and the present offers scant material for construct-
ing a valued self. For them, the present provides a distorted
mirror of their real selves, since it only reveals shadows of their
past selves. The present is grim, the future depressing. There-
fore, they search their pasts for more valued selves.
Living in the past can lead to anchoring the self to it. Isola-
tion, compounded by illness and confinement, can pull anyone
into the past. Although eight months earlier, Heather Robbins
had situated herself in the future, she now moved toward the
past. Caring for her new baby kept her confined and separated
from her earlier pursuits. She said, "Sometimes I see myself
wanting to do things, but right now, I see myself being stag-
nant, and it's okay. So it's okay. And maybe that's why I've
been living in the past right now, or I think a lot about the past.
Because six months ago I wasn't. I was thinking about what I
can do, not what I've done, and lately it's been thinking about
what I've done. I realize I'm going to change." Unless restricted
by illness, Heather Robbins will change because she is young.
But those elders who lose a sense of evolving and endure pov-
erty and confinement seldom have opportunities or encourage-
ment to change. They remain in the past.
"
Locating the self in the reconstructed past turns on three

major properties of immersion in illness: loss, unchanging
time, and social isolation. Losses can encompass a lack of con-
trol over circumstances, choices, and self-definition, as well as
health. Hence, people shake or mute these effects by anchoring
themselves to images of a past self. For example, one man who
lost agility and speech attempted to counter present images of
self by informing others about his past accomplishments.
Experiencing unchanging time while immersed in illness,
with its attendant constricted space and limited action, leads to
a slowed time sense. The self contracts. Oliver Sacks relates his
experience of hospitalization:
I had no sense, no realization, of how contracted I was, how

insensibly I had become contracted to the locus of my sickbed
—
and sickroom contracted in the most literal, physiological
terms, but contracted too, in imagination and feeling. I had be-
—
come a pygmy, a prisoner, an inmate a patient without the —
faintest awareness. We speak, glibly, of "institutionalization,
without the smallest sense of what is —
involved how insidious,
and universal, is realms (not least the moral
the contraction in all
realm), and how swiftly it can happen to anyone, oneself. . . .
Now I realized, such regression was universal. It would occur

with any immobilization, illness or confinement. It was an un-
avoidable, natural shrinking down of existence, made bearable
—
and untrea table because not realizable not directly realizable.
How could one know that one had shrunk, if one's frame of
reference had itself shrunk? (1984: 156-157)
Consistent with Sacks, as space shrinks, days contract. Time

narrows to the routines and rhythms of a hospital or house-
hold. With which qualities of lived time can these ill people
construct a self? Because our society values action over reflec-
tion, would they not therefore look to past events in which they
had been vital actors, or could appear to be so? For example,
having to spend her last years in an institution shocked an
eighty-five-year-old woman. She savored recounting stories
about the days when she worked on the family ranch. By doing
so, she salvaged and preserved a sense of the independence
and diligence that earlier identified her. Despite being isolated,
dependent, and frail, reclaiming and talking about her past self
brought it into the present. Simultaneously, by valuing her past
self, she gained strength to handle her present circumstances.
Thus, over months and years, people may tacitly come to

form their present self-images from the past. A new resident in
a board and care home described her counterparts as living in
the past, "The past is all they talk about." Perhaps the past was
all they had.
Ill people can remain tied to another time, another era, that
others may neither remember nor value. Further, if their health

precludes projects, pursuits, and purposes with others beyond
their daily care, they lose possibilities for projecting a snared
present and future. 1 Their range of "possible selves" also con-
tracts (Nurius 1989).
As lines between past and present blur, they seem to merge.
Older ill people, particularly, sometimes speak of events as if
they happened yesterday, when, in fact, they happened dec-
ades ago. This blurred time and collapsed chronology also fos-
ter developing a self in the past.
Having a self in the past is most visible when ill people judge
the present, in general, and their present identities, in particu-
lar, by the criteria Without validation of that criteria,
of the past .
a self situated in the past becomes even more discernible. In

short, the extent to which someone situates his or her self in the
past becomes apparent through interaction.
Situating the self in the reconstructed past influences others'
images of the person. Living a constricted life for years makes
anyone seem a little "out of step," if not entirely a relic of the
past, even when young. An ill person may be dimly aware of
not being quite "in tune" with the times or "in touch" with
events. Most likely, such individuals will not share the values
and perspectives of those who "keep up with the times."
As times and ideas change, and ill people are systematically
left out, the disparity increases between their situated selves
and external events. Even so, someone might locate his or her
self in the past for public display while simultaneously main-
taining a self in the present that a narrowed life (cf.
fits
McMahan and Rhudick and Tobin 1980-1981;

1964; Revere
Tarman 1988). For example, an educated and articulate elderly
man who had lost his health, his family, and his money, was
forced to spend his last years in an institution that served the
poor. He regaled the residents, staff, and visitors with tales of
his past political intrigues,powerful friends, and sexual adven-
tures. Heclaimed a past self imbedded in regional circles of
power and demanded deference due to his past associations
and accomplishments. His tales underscored his past signifi-
cance and laid claims for continued validation as the residents'
unofficial spokesman. 2 His commanding voice and authorita-
tive manner disallowed challenge to his claims.
This man used images of a past to construct a preferred self in
the present. As Hendricks (1982) implies, having intentions
lends a sense of continuity to time. Grasping the past and mak-
ing it continuous with the present mutes and lessens the dimin-
ishment of self brought about by illness.
Parallels can be found in the "senile" aged. Naomi Feil argues
that disoriented patients actually choose to retreat into the past.
In her story of Mrs. Wohl, who worked for an electric company
for fifty-eight years as a file-clerk and bookkeeper, Feil writes:
That life is with her now as much as ever. Being a good worker
is her reason for existence. Her purse is her file cabinet. She
explains, "It's a measure for keeping time, not so much a pocket-

7
book/
Mrs. Wohl no longer moves in chronological clock- time. She
time by how she feels. When we discuss time-change and
tells
her need to travel back to the past, she smiles, "I can travel
anywhere I like. The company will pay the fare." (1985:94)
Even well-oriented ill people find that the self they recreate
from the past remains fundamentally problematic. They no
longer can confirm it with actions and relationships given in the
present. Indeed, memory alone becomes the ultimate valida-
tion of this self, which leaves it fragile and tentative.
Despite occasionally finding an appreciative audience for his
tales of the past, another elderly man could not turn them into
a valued self in the present. His repetitious stories rambled
and, frequently, bored his listeners. Also, he neither sparingly
selected nor artfully timed his tales to support his present
claims. As an old
a result, others usually treated his stories as
man's quaint be noted, then disregarded.
relics to
Subsequently, such people may also question their value. Of
course, the prior selves of many older ill people are wholly
unknown, or unacknowledged by others, who, in turn, fail to
act properly toward them. Instead, others' actions imply their
negative assessments. And, in turn, these elders wish to reject,
hide, or transcend a devalued identity. In short, the self given
in the present situation is probably neither socially nor person-
ally valued.
Last, though people may try to situate their self-concepts
ill
in the past, present concerns and future worries can intrude

upon them. The weight of the present and future can disrupt
their reverie and cut through their images of past selves. Then,
they may view, and even affirm, the self that other people see
as given in their present situation. Even people who anchor
themselves the most in the past may attend to the present and
future. An elderly man lived in a board and care residence and
sustained himself with his many stories of his good deeds, now
long past. His caretakers identified him as someone who lived
in the past. Nevertheless, he, too, wondered about his future.
After telling his tales over and over, he ended each interview
with the haunting question, 'Tell me, do you think I will ever
get out on my own again?"
The Self in the Present
The the present is anchored to the here and now. Thereby

self in
time horizons stay close and neither past nor future assumes
priority.When people make living one day at a time a habit, they
come anchor themselves to the present. Yet others also live in
to
the present but remain relatively unaware of time or of self; they
take for granted a self situated in the present.
Situating one's self in the present necessitates living in the
present. How do people come to anchor their self-concepts to
the present? When do they do it? What does it mean to them?
Experiencing illness can affirm or accelerate lessons about

—
living in the present gained from other experiences, such as self-

exploration or therapy. A professor of dentistry had learned to
reduce stress while in psychotherapy. He now advocated "not
trying to carry the weight of the world " himself. He discovered
that this stance also kept him in the here and now.
Fulfilling cherished goals permits someone to loosen bonds
to the future. When an individual feels a sense of completion,
striving toward the future and situating self within it can
lessen. Earlier a middle-aged man had described himself as
situated in the future. One year later, he said, "I feel like I'm
more in the present. . . . Well, maybe I was hoping I would win
an award. And I won one. ... I don't seem to have as much
time to think about the future, too; that's part of it. And the
family relationships seem better now; they seem calmer and
more constant. .Also I've gotten to do more things I wanted
. .
to do. I wanted to travel for years and I finally did it."

Experiencing earlier losses can set the stage for learning to
live in the present. A spouse's death, an adult child's disability,
a forced retirement, or an unanticipated divorce can cause some-
one to begin to live in the present. When I asked Nancy Swen-
son what had helped her to learn to live in the present, she
said, "The illness. I think it's a big I think it was the thought —
maybe I'm not going to be here and I should start enjoying
things and, and counseling. [Earlier] my house burned
. . .
down and I lost everything. And then my stepdaughter ripped

off all of my good jewelry [that] always meant a lot to me."
. . .
Nancy Swenson had already lost many symbols of her past

photographs, clothes, furniture, mementos, even her income
tax records. Shortly thereafter her marriage crumbled. Her
losses separated her from her past and the symbols of it. Then
illness and possible death destroyed her future plans and drew
her into the present.
Reinterpreting earlier goals and pursuits as unimportant
makes it possible to relinquish them. The professor of dentistry
reflected, "I spend a lot less time agitating myself about school
politics. There are many things about the dental school that
bother me. ... I have fought and argued and held out against
graduating students that everybody else said you've got to
graduate and so on. And when they did graduate, they passed
the boards like nothing. Who knows whether you are right
. . .
or wrong? And so why waste that wonderful energy on some-

thing that's rather less than beautiful?"
Valuing immediately realizable goals makes the present liv-
able (Jones 1988). When people try to live one day at a time,
they set only immediate goals. Later, they may learn to set
some future goals without wedding themselves to them. For
example, Lois Jaffe observes, "People ask me if I plan for the
future. . Yes, I plan for the future
. . —
but only with my head.
My heart and my soul are in the present, in what I'm doing
today" (1977:208).
Learning to live in the present reflects a specific form of the
present. I turn next to consider three forms of the present. The
number, pacing, and quality of events contained in each form
distinguishes them. Different definitions of succession and du-
ration within these forms of the present shape meanings of it
(Flaherty 1987; Fraisse 1984; McGrath and Kelley 1986). 3
The Filled Present
Situating the self in the filled present means anchoring the

self to a present crammed with activities and events. Activity
and speed distinguish the filled present, rather than emotional
involvement. A
sense of rapid succession of present events
validates the self. When people live in a present so filled with
activities and medical regimens, they make comments like, "I
don't have time for the pain."
Some people pack the present by squeezing many experi-
ences, activities, and events into short spaces of time. As a re-
sult, they do more than their healthier counterparts (Charmaz
1987). They try to take control of themselves and their lives,
despite illness. Of course, they may take risks with their health.
They may not attend to developing symptoms or problems be-
cause their busy lives so involve them. Vera Mueller once de-
scribed herself as turning blue, experiencing chest pain, and
having an irregular heart beat. However, she did not keep her
doctor's appointment. She commented, "I didn't have time to go

over there [to the doctor's office]. ... I was busy writing a pa-
per, and I didn't want to be interrupted."
Cramming one's days can reflect either a lifelong pattern or
an awareness of a foreshortened life. These men and women
reason that they must pursue their interests and potential now,
for they might not have another chance. When Mark Reinert-
sen believed that he would not live past thirty, he filled his
days, quickened the pace of his activities, and crammed in as
many events as possible. He also resolved "to let the past go,"
without dwelling on it or on the future. After doing so, he
began to anchor himself to the present. In an interview eight
years ago, he noted the change: "I'm in the here and now a lot
more. But there was a time in my life when I wasn't in the here
and now, and now I am most of the time rather than being back
there or up there. It doesn't do any good. I can't do anything
about back there and I can't do anything about up there. So,
why be there?"
Mark Reinertsen believed that his earlier ruminations about
the past had prevented him from handling the present and
from knowing himself within it. His present self emerged from
past selves (Mead 1934). Though he sensed continuity of self
with the past, he guarded against having the past cloud the
present. Similarly, he resisted having a tenuous future blight it.
Later, Mark moved from a filled present to an intense pres-

ent. His story suggests how people change the timeframe of
their situated selves. Earlier, while on dialysis, his future had
looked precarious, limited, and foreshortened. Two years later,
he saw his transplant as a reprieve. At this point, he reduced
his activities considerably, but involved himself more deeply in
those he kept. Although his physical condition necessitated
this reduction, his life gained meaning and intensity. He felt
that he could hope for a future. He began to experience an
intense, though slow, present. Subsequently, he savored the
present and enjoyed small pleasures such as petting his cat or
sitting quietly and listening to music, pastimes that his packed
days had precluded. In short, when he could see a future ahead
of him, he moved into an intense present.
The Slowed-down Present
Scaling down the present by reducing the timing, pacing,

number, and intensity of involvements fosters anchoring the
real self to the present. Like the filled present, activity and
speed also distinguish the slowed present, but in reverse. In
contrast, the slowed down present may be driven by feelings.
When choices dwindle and sorrow increases, the slowed down
present seems to expand; time moves slowly and seems empty
(cf. Aaronson 1972). As one man said, time is "spaces to fill
between periods of sleep." May Morganson said, "I don't do

much; my life is very boring."
However, when people can choose to live in a slowed down
present, like taking one day at a time, they feel they have more
control over the present and more readily attach themselves to
it. As evident in preceding chapters, experiencing a slowed
down present can occur without situating the self within it.
Accepting a slowed down present does not come easily, and
these men and women often wished to return to more active
lives. For example, Ann Rorty remarked:
I think sometimeswhen I feel good . . . —

of when a few hours a
day, or a day where, you know, where everything is kind of
mellowed out and even though I'm still having a little bit of pain,
I'm thinking, "Well, you know, maybe I could do it maybe I . . .
could get back there and .

." and then I'll go do something and
.
the pain shoots, you know, through my hips or down my

legs. . And then I go, "No, I don't think I'm ready yet." You
. .
know, I don't think I'm ready to tackle it yet, because I know

—
what I would have to do. Like on my last job I couldn't do it. I
know I couldn't do it. So that kind of flies out the window.
Depression, disability, medications, and mental dysfunction

can all contribute to slowing down. A middle-aged man said,
"My head is still just, you know, reeling and I don't know
whether it's from lack of oxygen .but in terms of function-
. .
ing and doing stuff that I used to do ... I may not be able to do
that again."
In the meantime, this man looked at the bright side by taking

time for reflection. He remarked:
This is a very rare opportunity you have to sit and look at things
and from a state of quietness, [after] a state of getting caught up
in this rat race that we all make for ourselves. . . . This is the
chance to kind of back and see what it's all about and see
sit
where the values really lie in your life. ... It doesn't make any
difference to move unless you have someplace to move to. And
you know, unless you assess what things are meaningful to you,
how do you know which things you want to come out and grow
and what things you don't?
This man had some choice as to how to relate to time and

perhaps, might be able to redirect himself. In contrast, for many
residents of institutions, the slowed down present is endless.
They are assigned to their placements and become resigned to
their fates. These residents may anchor their self-concepts only
to select events, especially those in which their anonymity
fades. At visiting time, these lonely people station themselves
in the front lobby to converse with anyone passing by. Hungry
for compassion, for contact, for connection with the "real
world," they grab a visitor's hand and hope for a momentary
pause. A frequent visitor remarked, "They say, 'Oh, it's been so
long since you've been here,' and it's only been a week!"
Some residents anchor themselves to their times with regular
visitors. Upon escorting me to my car, a sixty- two-year-old resi-
dent of a board and care home said to me, "You asked what
time meant to me. Only times like when that little girl [sic] [his
thirty-one-year-old volunteer] comes to take me out or you visit
mean anything. All the rest means nothing. Nothing. "
For these residents, moments of acknowledgment and accept-
ance light their slowed present and shine meaning upon it.
Though bright, like a spray of fireworks against a dark sky,
such moments may be almost as evanescent.
The slowed down present can take a heavy toll on people
whose hopes, dreams, and plans were predicated on activity
and intensity. Should a person maintain an earlier criteria for
self-worth, anger, frustration, and blame follow. Bursts of anger
give voice to enormous frustration and disappointment. Furious

blame gets hurled, like arrows, at doctors, nurses, and spouses.
Anger and blame are ready means for enlivening a slowed
down present and for bringing intensity into the day. People
who use these means resist linking their self-concepts to the
slowed down present. Nonetheless, the passing days can grind
and deplete their spirits. Once directed outward, anger, frustra-
tion, and blame now cut inward. When others' judgments re-
inforce and magnify these people's self-blame, they become
further locked into their slowed down present. "Why don't you
go back to work?" "If you just had a better attitude, you'd get
better."
Here, accepting a self in the slowed down present requires
changed expectations of self and criteria for self- worth. Simply
maintaining a "positive" attitude and warding off depression
can become the criteria for a valued self. While immersed in
illness, Bonnie Presley still aspired to become a painter. She
told herself, "I could change those [negative] thoughts to be
positive. . Don't have negative feelings; don't express nega-
. .
tive emotion; use that energy into something else. ... I want to
take this energy that I have and that anger, because I'm sick,
and put it there into my work. If that's possible."
A focus on illness and regimen fosters ill individuals' accept-
ing a slowed down pace and keeping their real selves in the
present. As time passes, a slowed down pace may come to feel
secure and offer a foundation for ill people's real selves.
The Intense Present
The self inthe intense present emerges from the type and
quality of events in the present. A sense of passion, authentic-
ity, and involvement distinguishes the intense present. To ill
people, present events have force; they cast their lives into new
forms with new concerns, and seemingly sweep them into the
here and now. The present feels fully lived (Denzin 1984;
Flaherty 1987). The past separates from the present and the
future grows distant.
Any reflective individual may experience an intense present
while especially in the immediacy and urgency of critical

ill,
illness.Locating one's self-concept within that present, how-

ever, goes beyond merely experiencing intensity; it means ty-
ing vivid feelings and passionate convictions to the self. Then,
people try to perpetuate and to live within the force, urgency,
and clarity of the intense present, as they anchor their self-
concepts to it. Writer Susan Sontag captured that intensity
when interviewed about having cancer. She said:
It [thinking about death] hasadded a fierce intensity to my life

and been pleasurable.
that's
It sounds very banal, but having cancer does put things into
perspective. It's fantastic knowing you're going to die; it really

makes having priorities and trying to follow them very real to
you. (San Francisco Chronicle 1978)
A renewed vitality of spirit and purpose marks and radiates a

vivid present, despite, perhaps, diminished physical vigor. For
example, Nancy Swenson described her present self and life as
having far more depth than in the past. She added, "But I am
definitely on a decline, a lot of things that were no problem
. . .
before, I mean even a year ago ... I used to love to mow my

lawn . and now I find it's such an effort; it's such an effort."
. .
These men and women throw themselves into selected pur-

suits, which range from the grand to the mundane —
from writ-
ing an autobiography to living simply but independently. With
the intense present comes a sense of urgency urgency to act, —
to experience, and to bond with other people. Vera Mueller
described her sense of urgency as "taking today as it's pre-
sented to me and using it, making the absolute most of it."
Similarly other people feel a sense of urgency to finish projects,
to appreciate what they had taken for granted, to affirm attach-
ments, and to right conflicted relationships.
The self in the intense present develops when ill people
1) can look forward to a "normal" life again due to recovery or
marked improvement, 2) have faced and accepted death, and
3) have reviewed and reevaluated their lives. Believing that one
has recovered or markedly improved often leads to feeling in-
tensely alive, even resurrected. A man who had an angioplasty
" —

remarked, "I felt like a million dollars. I was bright; I felt more
energetic, more alive — I just — it was an amazing thing. . . .
And it [his cardiac rehabilitation program] has made, as far as I
am concerned, a new man of me."

After a young woman with diabetes adopted a more precise
method of monitoring her blood sugar levels, she said, "I feel
so much better now; the difference is amazing. My husband
said, 'You're like —
your old self again like you were before the
diabetes.' I feel like so much more is possible for me now. I feel
likeI'm living each moment now.
These people feel that they have had a reprieve, a new oppor-
tunity to make an ideal self real. Their real self is a survived self.
With the ordeal just behind them, they view their lives as hav-
ing new possibilities, fresh starts, and added opportunities.
They feel invigorated physically and therefore, perhaps, attend
more closely to the present.
Unlike people who
gain intensity by accepting death, these
individuals may feel victorious over illness and death. In their
view, they fought illness, defeated it, and left it behind. The
present expands as a future becomes possible. Previously, they
may have lived one day at a time to keep death and debility at
bay. But their present remained limited, circumscribed in inten-
sity and meaning, as well as in length.
In contrast, believing, as Susan Sontag did, that one has
faced and accepted illness and death also leads to situating the
self in the intense present. The certainty of one's mortality
—
and its imminence casts a vivid light on the present. Nancy
Swenson remarked, "Isn't it a shame that it takes illness for
someone to realize what's important in life?" A woman with
breast cancer told journalist Susan Schwartz, "If you face death,
life becomes more valuable. I had never been really here, in the
present, before. always looked ahead or worried about the

I
past. Now, I feel like I'm really here. I'm sorry that I had to
learn the hard way [by having cancer]" (1979:1b).
Here, the real self in the intense present is an ill self illness —
becomes part of self. Illness may even form the foundation of
the self and self-value. And illness may provide constant re-
minders of limited time. After his life-saving surgery, a middle-
aged man reflected:
"
But having been through that, the thing that impresses me the
most and is the most important for me to keep real clear is the
volatileness of life. And what do you do then? It's like . . .
there's no point to spend all that time worrying about all that
stuff [work, deadlines, status]; it's like building sandcastles. If
you're on the beach, that's a good thing to do, but don't get
upset when they fall down,
because that's what they are going to
do. The you are on that, the less stressed out you are
clearer
going to get when you build your sandcastle and the corner
crumples off, or a wave comes in because that's the nature of it.
So then it kind of refocuses my view of what I'm doing here
. . .
and what's meaningful about it and what isn't.
Living in the intense present fosters awareness of elapsing

time. Vera Mueller made this contrast; "In the back of my head,
there was always I'll have tomorrow to fix what I didn't fix
today. . . . Well, my life is the reverse of that now. Don't put off
what you can take care of today.
These people often reorder time to realize their priorities.
Vera elaborated: "Once the day is over, you can't go back and
do it again. It is gone forever. It's a once-in-a-lifetime opportu-
nity and so time has gotten very critical for me. Every single day
is a brand new opportunity to realize who I am and to be who I
want to be. And any moment that is wasted by not striving

toward realizing that potential is a moment lost forever."
Although Vera Mueller had already redirected her life before
her sister's untimely death, this significant event brought her
into the intense present. She said:
I know what I want to accomplish before I die. That's all very

sudden following Cynthia's death. When they put me in my
. . .
grave, what I want people to be thinking about and feeling and

reminiscing about is the fact that, "Yeah, the first few years of her
life were pretty fucked up, but she got her head together; she
found what she wanted to do and she did it, and she did it with
all the exuberance and, you know, happiness and eagerness for
life that anybody could possibly want." I want my children to be
able to think back, "Yeah, Mom lived her life, by gosh. Mom
enjoyed living." I want that to be the legacy I leave behind. I
don't want to leave them with the legacy that my parents, my
The Self in Time hi 249
mother and my fatherand my sister left me, which is one of

feeling that their lives were wasted tragedies.
Situating the self in the intense present tends to be a fragile

arrangement. Like the glow of compassion during religious holi-
days or the commitment to New Year's resolutions, daily rou-
tines dull and supersede the intense present. The wonder of
having a reprieve lessens. The excitement of dramatic improve-
ment fades. The imminence of death gives way to mundane
pursuits. Several months later, the young woman with diabetes
said that her sense of an expanding self and a vivid present had
faded, despite the new regimen. She added, "It's just a regi-
men, Kathy. It's a better regimen, but it is just a regimen." A
year later, a man who had had bypass surgery forgot how pre-
cious time had been. Two years after her mastectomy, Susan
Sontag said of the stark reality of facing death and following
priorities, "That has somewhat receded now; ... I don't feel
the same urgency. In a way, I'm sorry; I would like to keep
some of that feeling of crisis" (San Francisco Chronicle 1978). Five
years Vera Mueller remarked that "the sense of urgency is
later,
gone, at least consciously." Though the present may lose a
sense of vitality and intensity, ill people may continue to live in
the present.
As ill people reorder their priorities and locate themselves in
the present, they may find that rather than settling for less,
they have gained more. Nancy Swenson stated, "I was always
trying to achieve and strive for things. I was always looking to
the future. All the things that I was looking to achieve, I found
that they aren't important to me anymore."
Similarly, reappraisals of self result in efforts to change. Judg-
mental individuals become less so and acquiescent people be-
come more autonomous. In both cases, they observe their lives
more closely (Mann, Siegler, and Osmond 1972). As a result,
people follow new pursuits and seek new friends. Nancy Swen-
son said, "You find much more meaningful people in your life."
The flip side of observing is to focus inward on self
life closely
to the extent that one sinksBut a more positive paradox
into it.
occurs when people discover that they can face the future with
more ease and look back on the past with less regret. Without
250 h- ILLNESS, THE SELF, AND TIME
the pressure of mapped futures, they can anticipate selected

future events without feeling trapped by them. As one woman
explained, "I look forward to them [future plans] but it's not
like my life revolves around them." Similarly, by not clinging to
the past, these people do not ruminate about lost chances. And
a final paradox: by living in the present, these people believe
they create better pasts. Nancy Swenson advised, "Whatever
time it is, relish what you have of it because you can always
savor it; it never goes away."
The Self in the Future
Promise or threat beckons people who situate their self-concepts

in the future. Like fisherfolk who cast their lines in the sea, these
people cast their self-concepts into the future along with their
hopes and plans. They tie themselves to future plans, possibili-
ties, and dreams. 4 Why they do so turns on whether their lives
revolve around illness and whether their time perspective takes

emphasizing the future for granted. Hence, tethering oneself to
the future can take sharply different forms, and these forms can
change at different points in people's lives.
Situating one's self -concept in the future means living in the
future, directing one's thoughts, actions, and plans toward the
future. Hence, the future, rather than the past or present, as-
sumes distinct focus. Specific meanings of the future shape
how ill people project themselves into it. In turn, how someone
lives in the future shapes the self cast within it. In the following
discussion, I address how people attach themselves to what
they believe are positive futures: the completed self, the as-
sumed self, and the immortal self. However, as I suggested
earlier, immobilizing fears can also shackle someone to a dark
future — dependency and death.
The Dreaded Future
By residing in adreaded future, people can, albeit unwit-

tingly, attach themselves to it for periods of time —
long pe-
The Self in Time m 251
nods. Thus, they live in silent terror and wait for months, —
years, —
even decades for that future they know will come.
Meanwhile, they study each developing symptom, each pos-
sible sign foreshadowing the dreaded future, the certain fate.
The fear, dread, and terror of dependency and death can
shape the meaning of this future, as well as actual depen-
dency and dying.
These ill people view a sharply defined image of the future
through a refracted lens and, therefore, make it clearer and
bring it closer. To the extent that they narrow and intensify their
focus on a dreaded future, its image increasingly magnifies and
engulfs them. Life is out of control. These ill people disengage
from the present. The past fades. They feel catapulted into
inescapable doom.
Not surprisingly, feeling trapped by an uncontrollable future
also traps one in a dialectic of negative emotions. Anger, self-
pity, and depression lead to and strengthen the feeling of being
trapped. In turn, feeling trapped magnifies and extends anger,
self-pity,and depression. Though perhaps unspoken, defini-
tions of an uncontrollable future circumscribe interaction. Thus,
illness supersedes and dominates life, for illness bodes of death.
Quite possibly, a time perspective entrenched in the future con-
tributes to developing a trapped self in a dreaded future.
The Improved Future
Hoping or planning for a completed self means looking to the

future for a fuller realization of People who do so desire or
self.
expect their future selves to realize present potentials, to ex-

pand understanding, and to fulfill goals. They often envision a
preferred self in the future and pin their self-concepts to it. That
preferred self may serve as a bridge between a real self in the
actual present and an ideal self in a better future. A middle-
aged man with diabetes described himself and his future this
way:
I — —
tend tended, at least in recent years to be a future-situated
person, that things will get better. My wife and I will come to
greater understanding and sympathy for one another and, in

fact, that be more relaxed about my life. Til remem-
happened. I'll
ber that it isn't phony to be pleasant to people and, in fact, if I do

that, the chances are that they'll be pleasant to me. Yes, so I
guess there's a lot of self-improvement runs through me. My
—
work will be better known thinking about this time next year,
and so forth; there's that.
Plans and projects encourage anchoring oneself in an im-

proved future. After a turbulent first marriage, a young woman
felt exhilarated about her plans to remarry and about her better
prospects at work. She looked forward to a more stable and

happier future; she saw her real self in the future. When I first
interviewed her, Heather Robbins also anchored her self in the
future. She said, "I've always dealt in the future. And what . . .
I'm working for is not now; it's definitely not now, it would be
later. So it's like everything we [she and her husband] do now
is just temporary. It's a step to get somewhere."
Though Heather Robbins had already tied her self-concept to

the future before she became ill, she found that she redirected
her goals afterwards:
Even with I think that I am a lot less handicapped

this disease,
than a people who have all of their senses and their facili-
lot of
ties .and can walk and can talk but can't see [what's signifi-
. .
cant]. That is another thing this disease gave me that I didn't

have before. I had goals that were meant to be selfish goals to
make money. ... It didn't matter who got stepped on to get
there, either, but that's just not the way it is anymore.
Not everyone who tied themselves to the future saw doing so

as entirely good. Rather, their views, as well as their lives, led
them into the future, despite their misgivings about it. The
future tugs at these people, constantly pulling them into it. As
the man above said:
—
Of course, I've tried to live in the present just that's what poets
you to do, by and large, although they also tell you to remem-
tell
The Self in Time mam 253
ber the past. . Otherwise it [keeping oneself in the present] is

. .
an ideal,but not really a possibility for very long at a time. So I

would like to answer that I live in the present, thafs what I think a
person should do. But I think from what friends have let me know,
that I live in the future. I want to know what's coming next and
where what I'm saying will lead me.
Thus, people saw themselves in the future when their thoughts,

plans,and actions led them there.
Not all images of future self are easily disclosed. Several men
and women revealed anchors to a future self that they could tell
few people. Though one woman with multiple sclerosis man-
aged the present and sometimes dreaded the future, part of her
remained anchored to a future self unencumbered by illness.
Simultaneously, she accepted the medical model and followed
her neurologist's advice. Meanwhile, she rejected his state-
ments that her disease was progressive and unamenable to
reversal. Given her plight and her self-image as a realistic, re-
sponsible adult, she could not reveal her hope for the future.
For her, the completed self meant a renewed body and spirit,
the improved future meant recovered health.
The Taken-for-Granted Future
When people simply assume that their self-concepts are cast

into the future, they readily situate themselves in it. For them,
reality lies in the future. The past recedes quickly and may be
forgotten. The present provides the path to the future. Hence,
plans for the future shape the present and keep these people
moving forward into the future.
Because these men and women take their stance for granted,
they find the possibility that other individuals might not share it
to be a bit startling. "Of course I see myself largely in the future,
doesn't everyone? You've got to go forward." Time moves on an
—
upward plane progressive and better. A woman's disabilities
from multiple sclerosis caused her to relinquish a job she loved
and to give up driving, a passport out of confinement in her
—
suburban town. Although her activities had become more cur-

tailed and her days more isolated, she did not take refuge in the
past. She said, "I'm living now in tomorrow. The past is past. I'm
taking care of today and looking forward into tomorrow. I have a
saying, 'You can't look backwards into the future.' " When I
asked her what that meant to her, she said, "Well, why try to go
back and undo the past? You can't go back and live in the past
let's live in the future."
For her, the future did not preclude further disability. She
faced that. When I asked her how she defined the future, she
said, "I see it as continuing my life until my husband retires,
then doing what he wants to do. I don't see anything but for-
ward and upward. In fact, if I get into a wheelchair, I'll go with
him wherever they'll let me go."
Her stance preceded illness and reflected a lifelong time per-
spective. She observed, "I think generally I always looked
ahead instead of to the past. I've never been one to live in the
past. When bad things happen, that's fine, well let's go on. I
think it was an indirect lesson from my dad."
Unlike people who could look ahead only if their bodies re-
mained intact, this woman found her perspective useful to
ward off depression and to move out of it. Thus, she tried to
move on and avoid becoming stuck and down. She said, "You
just feel like you've been dealt a bad deck of cards. You just
figure why? think, 'How down.' I pick myself up and go on."
I
Maintaining this perspective while facing adversity depends

on having a reason to live and an enduring sense of self-worth.
Hence, social support can smooth the path into the future.
Similar assumptions can link people to a future that disallows
further illness and disability. A paradox develops. People who
hold these assumptions make promising candidates for arduous
regimens and rehabilitation programs. They will work hard,
take their programs seriously, and struggle to achieve small
gains. But they expect payoffs for their efforts — progressive im-
provement, recovered vitality, a better future. If these rewards
do not materialize, their enthusiasm melts into anger and depres-
sion. After several hefty defeats, they lose their seeming resil-
ience.They feel cheated, betrayed, and diminished. And then,
they may abandon their hopes and take refuge in the past.
The Self in Time mm 255
The Everlasting Future
Views of self and of the future shift when death feels immi-
nent. Thus, people who once lived in the past or present may
now tie themselves to what comes after death. The quest for
immortality gives life meaning. Creating an immortal self means
that one's life made a difference; it had a purpose. That purpose
may take two directions: to provide tangible proof of one's value,
and to free an encaged spirit.
Though some people tie their real selves to a religious or
spiritual belief, others create an immortal self through their
work and their products, and thereby preserve their identity
(Lifton 1968; Unruh 1983). Hence, they may
immortalize their
real self in the future by collecting prized objects, by writing a
book, recording their life history, or reminiscing with family
about their roles in past dramas. In this way they create their
"symbolic immortality" (Lifton 1968). They live on in the future
by turning the minds and touching the hearts of those who
follow them.
Ifpeople feel caged in the present, they may reach for the
future. If they feel locked in to a failing body, a limited life, and
a hopeless present (cf. West 1984), they may look beyond the
future for release and relief. They want to die. If they believe in
a hereafter, they feel that death gives them freedom and immor-
tality. For them, reality resides in the future —
beyond life as
they now know it.
Ron Rosato felt crushed by his physical dependence and spiral-
ing complications from multiple sclerosis. When he compared
his views with those of the people in his multiple sclerosis sup-
port group, he also began to allude to his view of himself: "They
carried on in reality and me knowing that this is not reality, I
mean to experience this stuff, this is not reality. The only . . .
things they explored were ways to be comfortable in wheelchairs

and stuff like that. And I just couldn't relate to that. I mean there
Iwas with this problem that was getting worse and worse and
there was no cure. ... I was looking for depth."
A severe infection had kept Ron in the hospital for several
weeks. He had wished to die; instead, he recovered. He said:
Ibelieved in God, some type of God, and I said, "Man, get me

out of here! Get me out of this body. Accept my spirit." And,
because my spirit needs to be free, you know. Didn't happen.
I don't think of death as gloomy; I see it as a release. I was
wishing so much for it. And now it doesn't scare me at all, at all.
But I wish and I wonder when it will happen. I'm ready, I
. . .
think.
When new purposes emerge, an individual may anchor the

self in the future rather than the past. Goldie Johnson had
tried to take refuge in the past when her health plummeted.
After her near-death experience, she saw herself and her fu-
ture differently:
I If you'd asked where I saw myself

see myself in the future now.
eight months ago, I would have said, "the past." I was so angry
then because I had been so active. And to go downhill as fast as I
—
did I felt life had been awfully cruel to me. Now I see myself in
the future because there's something the Lord wants me to do.
Here I crumpled in this chair not being able to do anything
sit all
for myself and still there's a purpose for me to be here. [Laughs.]

I wonder what it could be.
What does He want me to do?
Lessons from the Experience
of Illness
What lessons does the foregoing journey into illness provide? To

which dilemmas does it point? To conclude the book, I offer a
brief reflection about the effects of illness upon the self. During
this reflection, I draw upon how lived time contributes to
also
those effects. And in closing, I show how lessons from the experi-
ence of illness illuminate needed changes for social policy.
The effects of illness upon the self range from loss to tran-
scendence (Charmaz 1983b; Denzin 1986). For most people, the
effects of illness fall in between loss and transcendence —
small
victories for self, major comebacks to self (Charmaz 1973), re-
peated tests of self. Mostly, chronically ill people try to be them-
selves; they try to live with their illnesses, which I have dealt
with throughout the book. The course of chronic illness results
in physical losses, sometimes mental losses, frequent social,
psychological, and economic losses. When do these losses trans-
late into loss of self? How is it that some people can transcend
such losses? I turn here to look at loss and transcendence of self
directly.
Loss of self means being involuntarily dispossessed of former
attributes and sentiments that comprise one's self-concept, as
well as the actions and experiences upon which they are based. It
also means losing the self-definitions with which one had most
identified. With loss of self, earlier boundaries of the self-con-
cept shrink and become permeable. The self grows vulnerable to
demeaning images reflected by others. The attrition of former
attributes and sentiments results in changed feelings about self.
Resignation follows. Hence, loss of self results in passivity.
257
258 — ILLNESS. THE SELF, AND TIME
Transcendence of self means that the self is more than its

body and much more than an illness. Thus, illness does not fill
or flood the self, even though it may fill and flood experience.
Transcendence implies self-acceptance, rather than any accept-
ance of illness cloaked in stigmatized images and expectations
of resignation. In addition, transcendence implies revaluation
and renewal. Achieving transcendence requires making choices
and taking action.
Both loss and transcendence emerge from the experience of
illness and the respective meanings that people confer upon it.
Yet loss and transcendence are not static states of being, for one
individual may experience both —
sometimes dramatically, al-
though at different points in his or her illness. Further, distance
in chronological time between loss and transcendence can
shorten when relapses, complications, and crises are unrelent-
ing. With each episode, another physical loss. With each event,
another possibility for knowing self.
—
Loss and transcendence are grounded in time in moments,
in good days and bad days, and in lengthy durations of time.
Moreover, loss and transcendence become products of lived
time and reflect meanings of it.
Loss and transcendence can be elusive when the processes
creating them remain implicit —
particularly when the person is
unfamiliar with the course of illness and the ways of medical
care. Thus, the events that give rise to loss or transcendence of
self can remain unnoted or normalized by ill people. Similarly,
as I showed in Chapter 8, definition of the significance of an
event or period of time may occur long after someone has actu-
ally experienced it. Thus, what proves to be a turning point
may only become apparent in retrospect by noting contrasts.
Hence, experiencing loss of self can be an insidious process. As
such, occasional visitors may witness it more readily than the
men and women who experience it.
Certainly not everyone gains transcendence. Experiencing
loss after loss can produce numbness (Lifton 1968) and a shrink-
ing of self. Transcendence is something of a fragile state, for
affirming it may rely largely upon the person who experiences
it. Further, ill people may feel that they have transcended their
illnesses at certain points only to plummet into loss at other

Lessons from the Experience of Illness mm 259
times. For example, diagnosis of another serious illness can

rupture a hard-won sense of transcendence. Nevertheless, tran-
scendence is possible if ill people have time for reflection, gain
the tools to do it, and define essential qualities of self as distinct
from their bodies. Encouragement from others to reflect and to
define a valued self beyond a failing body supports transcend-
ence. Moreover, others' acclaim of the ill person's persever-
ance, courage, or strength may prompt his or her definitions of
transcendence. Suffering an onslaught of troubles without
flinching often gives ill people a sense that they have faced the
worst and have transcended it. Hence, transcendence may de-
velop from suffering tremendous physical, psychological, and
social losses.
Loss of self derives from how meanings of bodily and mental
competence shade self-definition. It also derives from the social
meanings and spiraling consequences of illness. Thus, loss of
self occurs with the help other people —
sometimes enormous
amounts of such "help." In contrast, transcendence sometimes
occurs despite other people. Furthermore, realizing transcend-
ence can necessitate separating the self from symbols of produc-
tivity, accomplishment, and success held by society.
The struggle for control of self in illness is a struggle against

loss and, sometimes, for transcendence. The devastating losses
from illness are apparent in the preceding pages. But, as I sug-
gest, the struggle against loss might remain implicit for months
and years, and whatever transcendence is gained may only be
realized in retrospect. For many people, the struggle against
loss arises in their efforts to live as they had in the past and to
fulfill their responsibilities as they see them in the present and
future. If they can keep illness in the background of their lives,

their physical losses may seem as imperceptible as aging but
accrue just as steadily.
Whether people struggle against loss at all becomes evident
when illnessdominates their lives. If they struggle, they do so
for control of the defining images of self, for control over their
bodies, and sometimes, for control over death.
Relative loss and transcendence of self turn on autonomy.
People can lose much, but retain a sense of a transcendent self
when they believe that they still make autonomous choices
despite vastly circumscribed possibilities, and when they can

preserve or create self-respect. Certainly it helps if other people
support choices and demonstrate respect, which fosters main-
taining self-respect. The self-respect and autonomy inherent in
transcendence reflect trust in oneself and in one's sense of inter-
nal and external realities.
Maintaining such trust in self often becomes problematic dur-
ing the vicissitudes of a chronic illness. Experiencing illness can
erode earlier trust in self. It can also nurture earlier self-doubts.
Subsequently, autonomy withers from within and, likely, is
stiffled from without. Loss of self in illness mirrors this loss of
autonomy. Loss of autonomy undermines the actions, emo-
tions, and beliefs upon which the self had been built. The loss
of autonomy that accompanies erosion of trust in self usually
occurs long before the person realizes it, just as someone may
have attained transcendence before defining it.
Autonomy means constructing independent choices and ac-
tions based upon reasoning (Cassell 1983). Control, in contrast,
may be taken for granted and tied to feeling. 1 Practical dilem-
mas for ill people often concern the boundaries of control. Vol-
untarily loosening or relinquishing control in certain areas to
preserve autonomy in others can help ill people maintain and
develop valued aspects of self. Then, the meanings gained
through experiencing illness deepen the self and the sense of
self-knowledge. Paradoxically then, through the experience of
wrestling for control of defining images of self, and abandoning
conventional symbols of control, ill people may gain autonomy.
For those people who gain a sense of autonomy, their stories
of illness may shift from chronicles of loss to tales of transcend-
ence. Subsequently, ill people may look back upon the past and
reconstruct their timemarkers and turning points into chronolo-
gies of a changed, more aware self, which documents their
development.
The struggle for control is a struggle to achieve balance. For
many people, it is a struggle between controlling the illness
ill
and becoming controlled by it, and by extension, other people.

In essence, ill people struggle to prevent illness from inundat-
ing their self-concepts. Their emphasis on control frequently
reflects implicit assumptions about time and body drawn from
Lessons from the Experience of Illness tmm 261
the wider culture, such as trying to relate to clock-time only

through conventionally prescribed ways or expecting one's
body to function like everyone else's. Should ill people accept
such beliefs, their beliefs turn against them as their illness and
disability increase. If so, their assumptions about controlling
their bodies, or at least their appearances, force them to retreat
to invisible, isolated lives.
Thus, a struggle for control may not work. In a larger sense,
experiencing chronic illness threatens to puncture widely held
beliefs of the nature of individual control in contemporary soci-
ety. These beliefs assume control not only over one's time and
body, but also over one's self and fate. Diminished control, in
turn, diminishes a self predicated on assumptions of free choice
and immediate action, when control stands as the measure of
self. When ill people have little control, they may use that
which they do have in ways that confound those around them.

Hence, their actions can easily be misinterpreted. For example,
someone who avoids disclosure of illness may do so as a way of
maintaining control. However, other people may interpret this
avoidance as denial or manipulation.
What implications does studying the self in time have for the
medical care system? The implications turn on how illness inter-
sects with the person's life. Thus, the person's age and the
defined degree of progression of the illness shape these implica-
tions. Studying the self in time does reveal how the system
encourages the forgotten chronically ill, especially older people,
to look to their pasts for self-worth since the system offers them
only a meager present and a bleak future.
By looking at the self in time, we can observe the implications
for the medical care system throughout the process of illness.
The experience of ill people is often taken as a direct reflection
of their position as patients within the medical care system.
Under certain conditions, their position can render them power-
less. But the picture is more complex. For months and years,
many people with chronic illnesses lead lives largely apart from
the system. During those periods of time, other identities than
that of being a patient — or for that matter, being a person with
a chronic illness — assume priority.
What happens to chronically ill people within the medical
care system is part of an emergent process, rather than the

reflection of static positions. Contacts with the medical care
system can come at crucial points in an ill person's life or at
points that they later define as markers of a revised life course.
As a result, health care professionals affect ill people's lives at
significant times. Clearly, rude discoveries, demeaning mes-
sages, and shocking news can accrue during the course of medi-
cal care if practitioners undermine or negate ill people during
negative identifying moments, identifying crises, and signifi-
cant events. Should the negative definitions of self in those
events stick, then the ill person's autonomy diminishes.
As evident in stories in preceding chapters, ill people may
accept negative definitions of self then struggle
initially,
against them and reject them. This struggle not only leads
them to reject the medical care professionals who made those
negative definitions, but also, in many cases, their treatment
recommendations. To the extent that ill people become em-
broiled in identity battles over defining images of self with
their practitioners, they may also struggle against useful help
and treatment that they might receive. They may remain au-
tonomous but at costs to themselves as well as to relationships
with their practitioners.
For some ill people, conflict with practitioners about the defin-
ing images of self has positive consequences. They not only
become more attuned to their bodies, but become more self-
conscious about how they wish to treat them. Through struggle
and conflict, ill people who once acquiesced to negative self-
definitions develop autonomous views of themselves and make
autonomous decisions about their lives and their care. Al-
though their motivation derived from proving the doctors
wrong, they come to gain a sense of belief in themselves.
The problems inherent in the medical care system become
apparent as illness worsens and as ill people are forced increas-
ingly to rely upon it. This is the crucial turning point for ill
people who have struggled valiantly for years to maintain con-
trol over their lives and to remain physically and financially
independent. The fewer resources they have in money, help,
and advocacy, the less likely they will be able to maintain some
semblance of autonomy within the system. While self-advocacy
Lessons from the Experience of Illness 263
may stave off the encroachments of the system upon autonomy

for a time, has obvious limits. Advocacy within the system,
it
notably by nurses and social workers, helps. However, the nar-

rowness of the system and the spiraling social, psychological,
and economic needs of very sick people undermine the best
efforts of concerned professionals to protect these patients' au-
tonomy and to get them good care. 2
The more dependent ill people become upon the health care
system, the more likely losses of self accrue. For these people at
this point, the medical care system takes on static, monolithic
qualities. They depend upon the system for care —perhaps
even for their very survival —but the system only provides care
in narrow, rigid categories. Autonomy and independence dis-
solve at this point.
People with chronic illnesses bring knotty medical and social
problems to their medical care professionals. The complex medi-
cal problems alone may defy a satisfactory solution. Many of the
solutions to patients' problems lie beyond the medical care
—
system financial needs for housing, nutritious food, transpor-
tation, and prescriptions, social needs for assistance, fellowship,
and purpose. Given the complexity of the patients' problems
and the limited ability of the medical care system to deal with
them, practitioners' frustration can be transposed to their pa-
tients. Hence, victim-blaming is a logical consequence of the
current system of care.
What changes can be made in the system that would promote
autonomy and, therefore, reduce loss of self? My argument
takes the form of other critics of medical care but with a differ-
ent twist on health (Conrad and Kern 1986; Crawford 1986; Zola
1986a). Perhaps most fundamental is the nature of the system
itself; it is an illness care system founded in profits. What
chronically ill people need is a health care system based upon

services — diverse services. They need to preserve and to en-
hance their current health status. The system reinforces sick-
ness over measures to maintain health during chronic illness.
Insurance plans, the Medicare program, and often local hospi-
tal and medical intervention until the
policies limit access
chronically person's health has deteriorated into a crisis.
ill
Thus, the need for a system that protects health and prevents
illness isperhaps even more pressing for chronically ill people

than for the general public. The system does not provide a way
for chronically ill people to regain, preserve, and maintain their
health in comprehensive ways —
even after they have suffered
serious episodes. Granted, an isolated hospital might offer a
cardiac or physical rehabilitation program. Similarly, a self-help
group may plan excellent programs in a specific city. But else-
where there may be no direct access to either rehabilitation or
self-help.
Measures such as rehabilitation or patient education, when
available at all, are usually available only for a brief period after a
crisis.This poses severe limits for chronically ill people. Because
learning about chronicity takes time and occurs during the tiny
tasks and major hurdles of living their lives, ill people will often
need information and help after they have left the medical set-
ting. Furthermore, if practitioners give help or treatment when
patients are ready for it, then they will be more likely to use it.
They need to be able to enter and reenter the system
—
repeatedly and on their terms, not those of their practitioners.
Similarly, in keeping with a model of acute care, the system
justifies continuing rehabilitation services on the basis of the
patient's progress. Many chronically ill people will reach a level
of functioning, for example in physical therapy, beyond which
they do not improve. The system requires the patient's steady
improvement. But chronically ill people must work just to stay
where they are. Without the treatment and the social rewards
of participating in it, they deteriorate —
sometimes rapidly.
Thus, chronically ill people need a system that furthers, rather
than limits, their access to services.
Who needs the services? As it stands, the medical care sys-
tem focuses on the individual who currently evinces the signs
of sickness. By taking the ill individual as the unit of analysis,
and therefore of service, the system ignores the social context of
that individual. Hence, it also ignores the consequences of ill-
ness for other people within the person's social circle. An obvi-
ous consequence is the creation or acceleration of illness in
overburdened caregivers. Less obvious are the conflict, emo-
tional isolation, and resentment that can spread throughout
families and destroy friendships. The system focuses on giving
Lessons from the Experience of Illness « 265
specialized care to one patient, or perhaps more accurately, to
one part of the patient. Simultaneously, the problems accruing
from serious chronic illness spread out through the patient's
life and permeate his or her social world.
Thus, changing the system to support autonomy and to re-

duce losses of chronically ill people means producing a more
open system with wider access, more comprehensive social,
medical, and health services, and less medical dominance and
fragmentation. These changes would help chronically ill people
preserve their physical health, their relationships, their morale,
and their autonomy. Subsequently, such changes would benefit
the health of everyone.
Epilogue
What has happened to the people whose lives figured so promi-

nently at the beginning of each chapter? Where are they now?
As the book goes to press, the following stories about my re-
spondents (appearing in the same order as in their respective
chapters) describe their lives at present.
Nancy Swenson continues to care for her mother who usu-
ally does not recognize her. But Nancy says that the care has
taken a toll on her health. Lately, she has developed a bad back,
a peptic ulcer, and diverticulitis. Recently, she had an emer-
gency hospitalization for a mysterious and severe gastrointesti-
nal infection for which she is receiving more tests and from
which she has not recovered. Nancy says, "It's kind of scary
because God, what if it's a [cancerous] mass; is this the
carcinoid; is this it?. . You think you're prepared, but you're
.
not." Nancy's doctor and new love both encourage her to relin-
quish her mother's care, so she has placed her name on a wait-
ing list of a facility in another county that has a special unit for
Alzheimer's patients. Nancy hopes for a future as she and her
partner plan to move to a more rural area within commuting
distance of this facility. Despite all her added health problems,
Nancy finds more value and peace in her life now than ever
before.
Gloria Krause died three years ago after her bone marrow
replacement surgery. The surgery was actually successful, but
Gloria's body was drained. After the surgery, she never left the
intensive care ward. Her relationship with Greg had ended
three years before she died. During her last days, she asked
herself and her family, "Why did I give so much of my life to
Greg?" At her memorial service, a beautiful picture of Gloria
266
Epilogue 267
portrayed her with all the joy, spark, and radiance of the pho-
tographer's model she had always aspired to be.
Over the past three years, John Garston has become increas-
ingly more reclusive. His closest companion, a feisty tomcat,
was killed on the highway a few weeks ago and John feels the
loss keenly. Except when a friend takes him to the grocery
store, he does not leave the tiny cabin where he lives and
works. With his discomfort, he no longer enjoys going to par-
ties or even to antique auctions despite available rides. John
managed to stop smoking, but his limited activity has steadily
increased his weight. He knows that his condition has pro-
gressed and he acknowledges that a winter cold could kill him.
Although he has frightening sporadic chest pains and increased
belabored breathing, John still adamantly refuses to seek care
or to be evaluated for SSI.
Harriet Binetti continues to live in her apartment with Sally.
Harriet spends most of her days in bed now because she suffers
from severe spasms due to the progression of her multiple scle-
rosis. However, she handles her confinement and discomfort
stoically, and says, "It goes with the territory; it is just part of
this disease." Harriet has much sorrow over her son's fate, for
Robert is now dying with AIDS. She and Sally try to give him
whatever help and support they can. Recently, he came to see
them, and during the visit Sally took care of both Harriet and
Robert.
After her long years of questioning the risks of intimacy, Sara
Shaw has a happy marriage from which she is learning and
growing. After the wedding, she moved to another state where
her husband works. Their growing assortment of animals and
the beauty of nature surround her on the small farm where they
live. Sara expects her first child soon. Apparently, her preg-
nancy triggered a full-blown episode of mixed connective tissue

disease, her first in years. Afterwards, her pregnancy pro-
ceeded well but, as she wrote, having the relapse was: "A re-
minder that I have a chronic disease."
Ann Rorty qualified for SSI, although she will be periodi-
cally reevaluated. Recently, she spent weeks in the hospital for
a virus and is just beginning to recover from that. She says
that she came close to death during that last hospitalization.
268 Epilogue
For two years, she has been involved with caring for her part-
ner's parents, for whom she has much affection. His mother's
Alzheimer's disease led to a recent institutionalization and his
father's cancer has become terminal. Ann gave respite care so
his father could do errands, cleaned their house, and spent
time with both parents. Ann sees her future as uncertain be-
cause she has been so ill and because her partner looks for-
ward to early retirement and traveling, a pursuit she feels that
she could not share. She says that her heart disease has re-
ceded into the past since her current illness and continuing
bowel problems are so much more pressing.
Tina Reidel still lives with the same man but perhaps with
greater ease and comfort. Even though she struggles with arthri-
tis daily, she continues to work and takes pride in her abilities.
Tina changed jobs several years ago. Her current position re-
quires her to impart accurate interpretations of insurance laws
to people who usually are in crisis. She handles her work well
and this supervisor values her. Pursuing her spiritual path has
given Tina's life meaning and form. She makes the arduous trip
to India to stay at the ashram when she can manage it finan-
cially and physically. Between participating in her spiritual
group and receiving treatments from alternative healers, Tina
seeks answers as to why she has arthritis and what she can do
about it. She says, "Our own selves are the cause of all this
stuff," and asks her chiropractor, "Why do you think I have so
much pain?" Tina currently sees an acupuncturist, homeo-
pathic practitioner, chiropractor, and a rheumatologist.
Mike Reilly continues to work as a salesman, a position he has
held for a couple of years. The job means long hours on the road
and a demanding daily schedule. Mike takes pride in represent-
ing the company's product and has appreciated having the job,
especially since his employers had initial misgivings about hir-
ing him due to his medical history. Mike works on commission
so the vicissitudes of the larger economy can directly affect him.
His daughters will soon be independent adults, which may ease
things for him and his wife. Meanwhile, everyone in the family
continues to have packed schedules and Mike continues his regu-
lar exercise program of walking.
During the last five years of his life, Mark Reinertsen found
Epilogue 269
the loving friends he had longed for earlier. His best friends, a
woman about his age and a young couple, remained steadfast
in their care as his condition worsened. They provided emo-
tional support, household help, and emergency transportation.
Nonetheless, he died alone. During his last emergency hospital-
ization, Mark mistakenly gave his physician his friend's work
number, rather than home number, but his crisis occurred on a
weekend. Despite his physician's valiant attempts to locate her
and hers to find Mark, he died before the mistake was reme-
died. Yet she felt that Mark may have intended to meet death
alone as if completing a symbolic circle with his mother, for she,
too, died alone with the same disease twenty-six years before.
With Mark's death, his family history also died because he had
been the lone survivor of his clan. Much more than being a
dialysis patient, Mark's friends remember him for his humor,
for his concern for humanity, and for his devotion to the peace
movement. Mark would have wanted it that way.
Methodological Appendix
Ibegan this study with the objective of furthering my knowledge

about relationships between having a chronic illness, the self-
concept, and experiencing time. From the beginning of this
study, I planned to gather more data to illuminate, elaborate,
and refine ideas that I had developed earlier in my dissertation
(Charmaz 1973). My dissertation research had consisted of 55
qualitative interviews with 35 people. To obtain more data, I
completed 115 additional intensive interviews with a new sample
of 55 people with chronic illnesses. My data for this study primar-
ily derive from these 115 formal interviews, although I have
included several interview statements from my doctoral re-

search. To buttress this data, I gathered a variety of research
materials, including unpublished and published personal ac-
counts, anecdotes, and observations. I also draw upon conversa-
tions and 20 informal interviews with caregivers and providers.
Because my earlier research had relied on referrals from
physicians, who I ought to
selected respondents they thought
see, and because some were conducted in
of the interviews
hospitals, I sought referrals from other sources and talked
with people in ordinary settings. To ensure that I would in-
clude people who avoided the medical care system, I sought
referrals from colleagues, students, friends, and respondents
as well as from professionals and illness support groups (Bier-
nacki and Waldorf 1981).
My objectives led me first to seek interviewees who had a
variety of serious chronic illnesses. The referral method allowed
the participants to ask questions that they might have hesitated
to ask me or to refuse to participate; however, only one person,
who had a major setback just before the appointment, did so.
271
272 Methodological Appendix
Ten individuals who learned of my work volunteered to partici-

pate. For example, a typist whom I found through a student
employment ad said that she had lupus erythematosus and of-
fered to talk with me.
My criteria for the selecting interview participants included:
1)a diagnosis of a serious chronic but not terminal illness, 2) a
disease category that poses uncertainty, 3) present or past ef-
fects of the conditionon the person's daily life, and 4) adult age
(twenty-one or older). The research criteria allowed for distinc-
tions that individual participants did not always make, such as
including people who did not identify themselves as having a
chronic illness, or excluding individuals who had conditions
like minor arthritis, which did not substantially affect daily life.
I included illnesses like Hodgkin's lymphoma and breast cancer
since their survival rates have greatly lengthened. The major
disease categories in this study include cancer, circulatory dis-
eases, colitis, renal failure, diabetes and metabolic diseases,
neurological conditions (multiple sclerosis, myasthenia gravis),
emphysema, and the collagen diseases (rheumatoid arthritis,
lupus erythematosus, idiopathic pulmonary fibrosis, mixed con-
nective tissue disease, and Sjogren's syndrome).
The following demographic characteristics describe the 55
respondents at the time I first met them. Thirty-seven of the
interview respondents were women; 18 were men. I determined
social class status by the respondent's or their spouse's occupa-
tion and educational level. Accordingly, their social class levels
divided in the following categories: 9 upper middle class; 17
middle class; 7 working class, and 22 lower economic class
(including public or disability assistance). As could be ex-
pected when studying people with chronic illness longitudi-
nally, marked shifts in income occurred for some people over the
course of the research, and for others before the study. For ex-
ample, two people who had been poor received sizable in-
heritances, which enabled them to adopt affluent middle-class
lifestyles. Several women who had been on welfare rejoined the
middle class through marriage. A few others, who had attended
college, graduated and got jobs. With but one exception, all of
the old women who were poor in late life had had working-or
middle-class lives. Several men retired early with a low income.
Sixteen individuals were between twenty-one and forty years

of age; 24 were between forty and sixty; 7 were between sixty,
and seventy, and 8 were over seventy. All the respondents were
white. Twenty-six individuals had more than two years of col-
lege, 7 held advanced degrees, and 14 had finished high school;
8 had not. Twenty-eight people had partners or spouses. Eight
people lived with children or roommates. Nine women and 3
men lived alone. Seven people resided in board and care institu-
tions. Most interviews were conducted in the respondents'
homes, although some took place at a dialysis unit, my office or
home. All but one person agreed to be tape-recorded.
In this type of study, the researcher's methods of collecting
data evolve while he or she is engaged in doing it. Because I
already had collected a substantial amount of data and had a set
of categories, my data collection methods for this study turned
on obtaining materials that would shed further light on those
categories. This approach to qualitative research, the grounded
theory method, depends upon developing and refining the data
collection tools while in the process of collecting the data
(Charmaz 1983a; 1990; Glaser and Strauss 1967; Lofland and
Lofland 1984; Strauss 1987). The grounded theory method and
the elusive nature of my topics led me to seek multiple inter-
views from certain respondents. I chose people who faced uncer-
tainty directly and were reflective about it. I wanted to follow
people over months and years to see how, if at all, their views
and experiences changed with the ebb and flow of their illnesses
and of their lives.
Of the 55 respondents, I interviewed 26 people formally more
than once. In turn, of those 26 respondents, I followed 16 men
and women from five years to over a decade. I would have
followed more had death or a move not intervened. Women
were particularly hard to follow as they changed names, moved,
or left the area entirely. Following people over time helps the
researcher to see, discuss, and interpret the changes people de-
fine as their conditions improve, worsen, or stabilize. Further,
multiple interviews also encourage a respondent to reveal pri-
vate views of self, as he or she develops trust in the interviewer
and comfort with the interviewing process.
Because I talked with a number of respondents multiple
274 hi Methodological Appendix
times and sometimes saw them in a variety of other informal

study edged toward par-
social settings, in certain respects the
ticipant observation. During this period, I attended several
weddings as well as several memorial services of people I had
interviewed. After we had talked four times, one person au-
dited a university class I was teaching. A few respondents
were friends or relatives of my friends and colleagues. I had
tea with elderly women, visited elderly men, admired pictures
of spouses, grandchildren, and boyfriends (in contrast, few of
the male respondents were single), and met family members,
friends, and housemates.
In keeping with the traditional logic of qualitative research,
generally, and the grounded theory method, specifically, my
research strategies differ from standard quantitative research
design in two major ways. First, in the grounded theory method,
the researcher uses his or her emerging analysis to direct the data
collection. Hence, my interview questions developed in theoreti-
cal scope and usefulness during the course of the study. The
questions reflected my deepening knowledge of the area, as well
as growing skill as an interviewer. Second, the grounded theory
methods place emphasis on developing theoretical analyses of
the collected materials rather than on statistical verification pro-
cedures (Charmaz 1983a; 1990; Chenitz and Swanson 1986;
Glaser 1978; Glaser and Strauss 1967; Strauss 1987; Strauss and
Corbin 1990). Hence, I aimed to check and to refine my develop-
ing ideas by collecting specific data addressing those ideas. I
designed an interview guide to explore both the respondent's
experience and my ideas. Time and self are elusive topics to talk
about; generally, illness is not. We only have a limited language
with which to talk about time and self. To some extent, discus-
sions about illness provide a vehicle for talking about time and
self. In keeping with the difficulty of the topic, as well as with the
analytic strategies of the grounded theory method, my questions

evolved as I developed the analysis.
Given these topics, and my sense that not everyone can
readily talk about them, I often could piece together beliefs and
assumptions and taken-for-granted ways of acting. The more
articulate or expressive men and women made more apparent
what remained implicit with others. And people vary in how
much they can talk about illness or about themselves, much

less about meanings of time. One woman said that she had
never talked so much about her illness to anyone. One man
said that he had seldom talked so extensively or so deeply
about himself. His statement and feelings provided me with a
vivid reminder of how relative disclosures and explorations of
feelings are. A moment before, I had thought to myself that he
had skirted views and feelings, although he had given detailed
information.
As a researcher, I sought to have people tell me about their
lives from their perspectives rather than to force my precon-
ceived interests and upon them. So I listened. I also
categories
believe that a researcher should not push the participant into an
emotional abyss to grab interesting data and then leave. Thus,
both the abstract level of the research topics and the potential
emotional pain around illness necessitated being sensitive to
how the topics and questions could affect a person. Once in a
while, the interviews elicited tears and sadness. Many people
remarked that the interview spurred them to reflect upon their
lives or was therapeutic. Several people commented that they
found me easy and safe to tell their feelings to. I told people to
call me if they wanted to talk further, and occasionally a few of
them did.
Usually, their stories tumbled out. Not uncommonly, one ma-
jor question (such as "How are you now?") would elicit a fifteen-
to-thirty-minute response. Later in the interview or in another
interview, I asked specific questions. In keeping with the
grounded theory method, these questions took into account ar-
eas and categories that I was developing. I discovered that partici-
pants could respond to abstract questions about self and time if
they had thought about the issues posed by the question.
Some of the ideas discussed in the book are hard to explore
through typical interview methods. But they can be pieced to-
gether from informal conversations, personal accounts, or wit-
nessed during participant observation. For example, additional
material about locating the self in the past can be gained from
participant observation, for this process largely occurs without
people's immediate awareness.
Although the grounded theory methods have been cast as
276 h Methodological Append IX
realist ethnography (Van Maanen 1988), what the method is

seems to be taken as equivalent with how it has been used in
earlier works (esp. Glaser and Strauss 1965;1967). It isn't equiva-
lent. In this study, my use of grounded theory methods has a
social constructionist, phenomenological, subjectivist cast be-
cause emphasize lived experience throughout, offer "thick
I
description" (Geertz 1973) of it, provide an interpretative ren-

dering, and recognize that any such rendering comes from a
particular point of view. As Clifford (1986; 1988), Marcus and
Fischer (1986), and Richardson (1990) emphasize, the linguistic
style of a work reflects the choices and assumptions of an au-
thor, which in turn reflect his or her training, interests, research
decisions, relationship with the observed, and the historical
and social context in which the study is completed.
Since I have detailed my analytic procedures elsewhere
(Charmaz 1983a; 1990), I shall only outline them here. I began by
exploring general research questions rather than by deducing a
set of logically related hypotheses from a preexisting body of
theory. As I gathered the data, I coded them for the respondent's
assumptions, meanings, feelings, and actions. Instead of lump-
ing responses into static topics, I tried to look for active processes
and to discover how specific events and general processes were
related. The coding process leads to making categories and ana-
lytically exploring them. By collecting more data on my develop-
ing categories, I expanded upon them and refined them.
Throughout the study, I compared individuals' responses at dif-
ferent points in time, individuals with each other, and category
to category. Throughout the analysis, I wrote memos to define
and examine implicit ideas and processes that I saw in the data.
These memos helped me to synthesize data and to define pat-
terns within it. As the research ensued, my memos became more
conceptual and abstract.
The grounded theory approach fosters following new leads
and issues. For example, I had not realized the significance of
disclosing illness until a number of people talked spontane-
ously of the problems they had with it. Then I went back and
studied earlier interviews and formed new questions around it
to ask others. The grounded theory approach aims to provide a
dense set of social scientific concepts that define and explore
Methodological Appendix § 277
processes.We assume that any portrayal of a process may
change and should not be construed as final or as ultimate
truth. In that spirit, I invite further exploration and refinement
of the preceding analysis.
From A Leg to Stand On, by Oliver Sacks. © 1984 by Oliver Sacks. Reprinted by
permission of Summit Books, a division of Simon & Schuster, Inc. From "A Day to
Day Struggle," in California Living, San Francisco Chronicle & Examiner, by Roger
Ressmeyer. © 1983 by San Francisco Examiner. Reprinted by permission of The San
Francisco Examiner. From Stroke: A Doctor's Personal Story of His Recovery, by Charles
Clay Dahlberg, M.D., and Joseph Jaffe, M.D. © 1977 by Charles Clay Dahlberg and
Joseph Jaffe. Reprinted by permission of W. W. Norton & Co., Inc. From After the
Stroke: A Journal, by May Sarton. © 1988 by May Sarton. Reprinted by permission of
W. W. Norton & Co., Inc. From Plaintext, by Nancy Mairs. © 1986 by Nancy Mairs.
Reprinted by permission of the University of Arizona Press. From Can You Hear the
Clapping of One Hand? Learning to Live with a Stroke, by Hza Veith. © 1988 by The
Regents of the University of California. Reprinted by permission. From The Deepen-
ing Shade: Psychological Aspects of Life-Threatening Illness, by Barbara M. Sourkes. ©
1982 by University of Pittsburgh Press. Reprinted by permission of the University of
Pittsburgh Press. From Chronic Fatigue Syndrome, by Gregg Charles Fisher. © 1987 by
Gregg Charles Fisher. Reprinted by permission of Warner Books, Inc. From Successful
Living with Chronic Illness: Celebrating the Joys of Life, by Kathleen Lewis. © 1985 by
Kathleen Lewis. Reprinted by permission of Kathleen Lewis (Avery Publishing Co).
From "Living With Cancer," by Matt Clark et al. © April 8, 1984 by Newsweek. Re-
printed by permission of Newsweek Magazine, Inc. From The Body Silent, by Robert
Murphy. © 1987 by Henry Holt and Co., Inc. Reprinted by permission of Robert F.
Murphy. From "Cancer Comes Out of the Closet," by Susan Schwartz. © 1979 by
Santa Rosa Press Democrat. Reprinted by permission of the Santa Rosa Press Democrat.
From One Step at a Time, by Lenor Madruga. © 1979 by McGraw-Hill, Inc. Reprinted
by permission of McGraw-Hill, Inc.
An earlier version of "The Self in Time" appeared in Studies in Symbolic Interaction,
edited by Norman K. Denzin, 10:127-141 (Greenwich, Conn.: JAI Press). Reprinted
by permission of JAI Press.
Notes
Chapter 1 : Introduction
1. Rather than medicine as a social institution taking control of people's lives,

medical practitioners become agents of much wider and interlocking insti-
tutions that have a powerful grasp over individual lives. Restrictive Medic-
aid regulations do not simply limit actions and choices of patients, and for
that matter, practitioners; instead, they are coercive and punitive particu-
larly toward patients. In this sense, the medicalization of life argument,
though an important one, needs to take into account how economic and
political constraints become imbedded in medical care and are played out
in patients' lives. For illuminating discussions of the medicalization of life
thesis, see Conrad and Schneider 1980; Zola 1986a.
2. Throughout the book, I use the terms "self" and "self-concept" inter-
changeably. A self-concept means the relatively stable, coherent organiza-
tion of characteristics, attributes, attitudes, and sentiments that a person
holds about himself or herself (Gecas 1982; Turner 1976). Because self-
concepts consist of organized beliefs and feelings, they tend to change
slowly. Self-images, in contrast, are fleeting images given in experience.
But even these images are reflected through the mirror of interpretation of
others' views of oneself. Not all self-images become part of the self-
concept. But usually, repeated or crucial self-images eventually influence
the self-concept.
3. Carlos Castenada's (1971) depiction of a separate reality of the magical
culture of the Yaqui hearkens back to Schutz's (1971) conception of multiple
realities. Denzin (1986) also observes that the world of the alcoholic is a
separate reality.
4. For an examination of a journey with purpose and resolve, see Biernacki
1986. Biernacki traces the recovery from heroin addiction through addicts'
resolve to make identity changes. His framework provides insight into the
processes of identity change and the place of personal resolve in making
them.
5. Thus the analysis that follows falls in the categories of reconstitution of self
279
280 mm Notes to Pages 7-42
with an emphasis on living with chronic illness (see Conrad 1987). In

keeping with Conrad, I aim to make sociological conceptions of the illness
experience. In contradistinction to Conrad's proposal (1987), I use differ-
ent illnesses and the extent of them as the backdrop for comparisons
between my conceptual categories, as analytically indicated, rather than mak-
ing meaningful and explicit comparisons among illnesses on sociological
grounds, as Conrad proposes. Surely, his proposal has value; it simply
means a somewhat different research agenda and analytic venture than
what I provide here.
6. Social scientific work, like other science, consists of stories, despite its
positivistic trappings (Davis 1974). Any research is a product of the interac-
tive processes between the observer and the observed and for that matter,
between the observer and his or her discipline. Stripped of traditional
disguise, the research process deals with creating the data, compiling it,
and conferring meaning upon it.
7. A caveat. To portray the feeling of experiences and events, I sometimes

write as if those experiences and events had monolithic properties. They
do not. Similarly, I may seem
to argue that time acts —
such as moving,
slowing, or stopping. does not. But people's perceptions of change and
It
meaning are expressed in their views of time. Part of those perceptions are
the feelings that emerge in these people's experience of time while they
are ill. The melding of feeling and time into a reality, rather than the reality
is what I wish to portray.
Chapter 2: Chronic Illness as Interruption
1. For a more complete discussion of the sick role, see Gerhardt 1989; Gordon
1966; Segall 1976; Siegler and Osmond 1979; and Twaddle 1969. The acute
illness and care model inherent in the concept of the sick role is shared by
many practitioners as well as patients.
2. Turner (1976) observes that people do not adopt all of their attributes and
characteristics into their self-concepts. Rather, they are selective. It follows
that ill people, particularly in the early stages of illness, will base their
concepts of their "real" selves on other attributes than illness.
3. Of course, someone else might so resent lack of acknowledgment from a
spouse that none of the positive consequences above could have been
realized.
Chapter 3: Intrusive Illness
1. My argument takes ill people's definitions as the point of departure. I do
not negate the existence of disease processes. I do take note of how people
recognize and act upon those disease processes and treat them as "illness."
Notes to Pages 44-88 — 281
2. This woman's views come close to Herzlich's (1973) concept of
of illness
illness as a destroyer, with the subsequent logic of distinguishing between
remaining active and not being ill, merging self and activity, and valuing
self in activity. See R.G.A. Williams's (1981 a and b) explication of logical
analysis. At the time of her comment, Vera Mueller was a Medi-Cal pa-
tient. She talked about her extreme reluctance to make use of the service
because she could not stand the possibility of being seen as abusing the
welfare system. Conceivably then, her views of and experiences within
the Medi-Cal system contribute to her definition of illness.
3. Though some people show concern for disease control, most place greater
emphasis on the consequences of symptoms for their ability to function
today and tomorrow rather than in consideration for years or decades into
the future (see also Strauss et al. 1984).
4. Acceptance of illness is often taken by practitioners as a prerequisite for
being able to move beyond it. We need to look at who makes the assess-
ment of acceptance. Whose terms are accepted? Why? Acceptance is also
couched in evaluations of compliance to practitioners' programs and ad-
vice (see alsoCharmaz 1980b).
5. By doing so, ill people may reduce the intensity of bad days and keep
them more distant from self.
6. The differences in attitudes between very old and younger individuals
may represent social class, rather than age differences. Most very old
people belong to the working class because education and opportunity
were the purview of the privileged when they were young. Many of the
very old were immigrants or the sons and daughters of immigrants. In
1980, less than half of those over eighty-five had completed one year of
high school; almost one-third did not complete eighth grade (see Bould,
Sanborn, and Reif 1989).
Chapter 4: Immersion in Illness
1. A blurring of spatial arrangements may blur progressive immersion in

illness. Without the customary markers of days and hours in a conven-
tional workplace, for example, ill people may not realize how their lives
have changed.
2. In this sense, illness reveals uncertainty and instability in a world previ-
ously taken for granted as predictable and stable. Illness also undermines
or destroys beliefs in the ability of the individual to control threats to the
self (Kidel 1988).
3. The smoothness of a repeated regimen itself can become a marker of the
self and a sign that nothing worse is happening with the illness. Not
uncommonly, therefore, people take refuge in their regimens; they are a
safe place to situate the self. The regimen takes on its own rhythm, a
cyclical rather than a linear rhythm (cf. Young 1988). Of course, the effi-
cacy of the regimen may remain untested.
282 « Notes to Pages 88-135
4. Sourkes (1982) calls it "neutral time," perhaps to indicate the lack of move-
ment; however, though bland for some people, this uncertain, ambiguous
experience of time is not bland for others. Further, though illness may
seem quiescent during this period, the ill person may become aware of the
slightest nuances of change.
5. The mechanical repetition of the same day is at odds with the rapid se-
quencing of events that we associate with youth. For young people who
tied self-worth to activity and diversity, being ill primarily meant a series of
losses. In addition, creating meaning while experiencing unchanging time
taxes anyone who holds a linear progressive view of time.
6. Some ill people had been at the centers of their family and friendship
circles; they had focused on others and their needs for years. They may
infuriate their family and friends when they no longer do so. Then they
are likely to become depressed, apathetic, and withdrawn —
quietly pas-
sive. Sometimes relatives will attempt to intervene with an elder's turning
inward to self when they view doing so as taking permanent leave of
them.
Chapter 5: Disclosing Illness
1. Throughout the chapter, I I note where

focus on disclosing, although
disclosing fits and how it compares with them.
with other forms of telling
2. Certainly, all the ways of telling make more or less use of impression
management. Hence, people move from controlling highly manipulative
and strategic performances to making mental plans about how to inform
effectively. See Schlenker 1980 for a discussion of varied uses of impres-
sion management.
3. Hochschild (1983) discusses the commercialization of feeling with man-
aged emotions that benefit the corporate owners, rather than the workers.
The logical extension of her argument might lead one to advocate express-
ing feelings. However, ill people often find that expressing anger leads to
more anger; expressing self-pity generates more self-pity, etc. (cf. Tavris
1982). Even if ill people internalize feeling rules that call for limiting emo-
tional expression, they still may say that they "feel better" about not
letting their feelings show.
Chapter 6: Living with Chronic Illness
1. The health care system separates people from each other, encourages them
to see illness as a private problem, and fosters independent and individual-
ized, rather than shared, learning about the disease and how to live with it.
Irving K. Zola (1986b) makes a similar point in his review of Locker's Disabil-
Notes to Pages 138-191 — 283
ity and Disadvantage. He states a la Parsons (1953) that a function of the
doctor-patient relationship is to contain the spread of deviance; therefore,
patients are kept isolated from each other. As Zola points
out, the Indepen-
dent Living Movement has made substantial inroads in reducing isolation,
sharing information, and eliminating barriers to full participation. The
other notable movement in which patients take control of their care and
shared medical knowledge is, of course, the women's health movement.
See Ruzek (1979) for the history of that movement. In contrast, I argue that
the hospice movement differs since it has moved to become more thor-
oughly imbedded in the established medical care system (Charmaz 1980b).
2. I am indebted to Barbara Rosenblum for clarifying this point.
3. Pinder (1988) also has observed the process of making trade-offs to accom-
plish goals and tasks among people with Parkinson's disease. She points
out that the trade-offs they make are without a stable foundation. An
uncertain course of illness can vitiate efforts to create a balanced life,
despite whatever trade-offs are made.
4. Attending a community dining site for the elderly may prompt older people
to regain community standards of cleanliness, which they had lost for
months or years. Their peers may prod unkempt elders to attend to them-
selves with questions like: "What's that spot on your blouse?"
5. Irving K. Zola made a similar point in his presentation, "Aging and Disabil-
ity," given at Sonoma State University, February 3, 1987.
6. Corbin and Strauss (1988) also found the domino effect in their study of
chronically ill and disabled people.
Chapter 7: Time Perspectives and Time Structures
1. Illpeople's time perspectives shift according to the meanings that they

way that they experience it, their "life structure"
attach to their illness, the
(Levinson et al. 1978), their age, and whether or not they can merge the
illness into their daily routine. Idler (1979) states that "Sickness creates and
measures its own
time." Yes, under certain conditions, it does. These
conditions include: 1) acknowledging sickness, 2) contrasting present sick-
ness and past perceived wellness, or quiescence, and 3) observing when
lifebecomes structured around illness. Otherwise, sickness does not cre-
ate and measure its own time at all unless and until the person feels
overcome and swept away by it.
2. Living one day at a time takes work. Doing so especially takes work when,
otherwise, fear and loss would overwhelm the person. See Lewis (1985).
3. Certainly living one day at a time is not limited to ill people. The strategy
has long been used by recovering alcoholics. Healthy people also adopt
the strategy when feeling overwhelmed by their situations.
4. I am indebted to Anna Hazan for this anecdote. Personal communication,
September 23, 1988.

284 — Notes to Pages 201-260
Chapter 8: Timemarkers and Turning Points
1. This stance comes close to what Maines and Hardesty (1987) call a linear
temporal world. Here, people are concerned with what they need to do
and pay less attention to or disregard the possibility that their futures are
now contingent.
2. Anniversaries are long remembered and may be honored. Cousins (1983)
tells of a woman who visited him who wanted to start a support organization
She had had an episode of cancer ten years before. After
for cancer patients.
her tenth anniversary of the initial report, she declared herself free of cancer.
Anniversaries also may linger in mood though the marker itself is forgotten.
Hall (1983) reports that each spring he suffers from a lingering depression.
Years later he realized that his depression emanated from the collapse of his
parents' marriage and the departure of his mother from the family.
3. Couch (1982) makes a similar point when he observes that the past can be
forgotten, selectively remembered, or reconstructed.
4. Lewis (1971) argues that shame is an emotion that is blamed on another.
Not necessarily. Another person may evoke feelings of shame, under cer-
tain conditions. But when feelings are ambiguous and the boundaries of
the self are open, then shame may become an overriding emotion. Knowl-
edge of community standards alone, without the actual presence of an-
other individual, can give rise to shame. For an explication of shame as a
master emotion, see Scheff 1989; 1990.
Chapter 9: The Self in Time
1. This loss is often implicit, though understood by ill people who believe
that they have left the world of active, productive adults. Nursing home
patients particularly may lose their connecting links to people outside the
they become a part of the institutional reality.
institution, as
2. Mishler (1986) offers a comprehensive discussion of the construction of
narratives and of their reconstruction by social scientists.
3. For discussions of the meaning of duration, see also Flaherty 1987, Mead
1934, and Sharron 1982.
4. Lopata (1986) provides the insight that a life review not only stretches back
into the past, but also may stretch into the future.
Chapter 10: Lessons from the Experience of Illness
1. I overstate the distinction here between reason as the basis of autonomy

and emotion as underlying control for purposes of contrast. Clearly,
Notes to Page 263 — 285
demonstrating autonomy is not stripped of feeling, nor does maintaining
control occur without reasoning. They simply represent more or less feel-
ing and reasoning. Presumably, as people gain autonomy, their actions
reflect conscious reasoning.
2. It is important to distinguish between advocacy and intervention here.
Many professional interventions do not reflect advocacy. Despite being

well intended for the patient, the actions do not derive from the patients'
goals and priorities. Rather, these actions derive from the professional's
sense of what can, and often should, be done.
Glossary
Apnea. A temporary state of not breathing; it often occurs dur-

ing sleep among adults (sleep apnea).
Board and Care. Residential care; a level of institutional care
providing residents with a room (often shared), meals, and
some supervision of nonmedical personal care. These facili-
ties usually do not offer nursing services. They may not
have twenty-four-hour supervision, although many do.
Frail elderly and younger people with disabilities live in
these which are private or paid through Social
facilities,
Security supplemental income.
Carcinoid Syndrome. A complex of symptoms, including flush-
ing of the skin, diarrhea, abdominal cramps, valvular heart
disease, and cyanosis, which are caused by vasoactive se-
cretions of metastatic small tumors usually in the intestinal
area. These tumors are extremely difficult to locate during
surgery. Survival rates after diagnosis range from two to
twenty years.
Cerebral Vascular Accident (CVA). A general term to indicate
abrupt blockage with resulting insufficient cerebral circula-
tion or hemorrhage in the brain. In either case, the resulting
neurological deficits reflect the area of the brain that is dam-
aged. The ischemic lesions are commonly referred to as
strokes. Common residuals include paralysis, weakness, or
loss of sensation on one side of the body, loss of speech and
language skills, impaired reasoning, facial paralysis, emo-
tional lability, personality changes, and depression.
Chronic Fatigue Syndrome. A cluster of symptoms including
debilitating fatigue that remains unrelieved by bed rest,
reduces the individual's daily activity by 50 percent, and

287
288 Glossary
cannot be attributed to any other condition (Fisher et al.

1989).
Colitis. An episodic or chronic inflamation of the colon charac-
terized by abdominal pain, constipation, and diarrhea.
Some people do not experience pain but have sudden, ur-
gent, uncontrollable episodes of diarrhea during or immedi-
ately following a meal.
Diabetes. A common chronic metabolic disorder resulting from
insufficient production or function of insulin. Symptoms
include weight loss, excessive thirst and urination, and the
presence of sugar in the blood and urine. Type I diabetes
usually has an onset in youth and results in requiring injec-
tions of insulin. Type II is adult-onset and may be precipi-
tated by obesity, pregnancy, and stress as well as heredity.
Mild forms may be handled by diet, rest, and exercise. In
both types, serious complications can cause atherosclerosis,
coronary artery disease, ulcers and gangrene of the feet,
blindness, kidney failure, and peripheral neuropathies.
Discoid Lupus. A chronic disorder, probably autoimmune in
origin, primarily affecting the skin with characteristic but-
terfly-shaped lesions across the cheeks and bridge of the
nose. Patients are often photosensitive.
Emphysema. An abnormal condition of the lungs in which
the air spaces of the lung enlarge, accompanied by de-
structive changes of the walls of the alveoli resulting in
decreased respiratory function. Symptoms include short-
ness of breath, labored breathing, cough, rapid heart rate,
with subsequent restlessness, weakness, and confusion as
the disease progresses and the brain does not receive
enough oxygen. Pulmonary edema and congestive heart
failure are common complications.
Environmental Illness. A severe sensitivity to ordinary chemi-
cals and pollutants that can trigger exhaustion, respiratory
disorders, neurological symptoms such as disorientation,
neuromuscular dysfunction, and disability, and life-threat-
ening heart arrythmias. People with these symptoms of-
ten describe themselves as allergic to traffic fumes, natural
gas, mildew, paints, carpets, synthetic fabrics, and plas-
tics. They strip their homes of such materials and may
Glossary — 289
seek housing in areas without pollution. Their illnesses
are controversialand largely unrecognized by medical
professionals. Many allergists believe that the illness is
psychosomatic rather than allergic in origin.
Exacerbation. A flare-up of symptoms; an increase in the pro-
gression of a disease.
General Assistance (Public Assistance). Extremely limited wel-
fare assistance for impoverished adults.
Hodgkin's Lymphoma. A malignant disease of unknown cause
characterized by cellular changes and enlargement of lymph
node tissue. It may occur in localized areas or throughout
the body, and it may vary in rate of progression. The symp-
toms include enlarged lymph nodes, fatigue, generalized
itching, low-grade fever, loss of weight, night sweats, and
pain when there is bone involvement. Radiation and/or che-
motherapy produce lengthy remissions in many cases and
long survival rates in most cases with limited disease.
Iatrogenic Effect. A condition caused by diagnostic proce-
dures, medical treatments, and medical or surgical inter-
ventions or by contact with medical settings or staff.
Idiopathic Pulmonary Fibrosis. A disease of unknown origin
in which there is a substantial increase of fibrous connec-
tive tissue in the lungs. It leads to fatigue, weakness, short-
ness of breath, and labored breathing.
The temporal course of the disease and the
Illness Trajectory.
work and relationships involved in controlling or shaping
this course (Corbin and Strauss 1988).
Lupus Erythematosus (Systemic Lupus Erythematosus). An in-
flammatory connective tissue disease that affects the vital
organs as well as the joints and central nervous system.
Lupus patients experience high fatigue, arthritis and arthral-
gia, cutaneous lesions, and, often, photosensitivity. They
frequently have recurrent pleurisy, enlarged lymph glands,
inflammation of the pericardium, central nervous system
involvement, and progressive renal failure.
Medicaid Program. The federally supported and state admin-
istered medical assistance program for those in need. Un-
insured individuals, primarily low-income elders and
those eligible for other public programs, who meet the
290 — Glossary
stringent Medicaid eligibility requirements, receive treat-

ment through this program.
Medi-Cal Program. The California Medicaid program.
Medicare. The federally supported catastrophic medical care
insurance program available to elderly people who are cov-
ered by Social Security. This program requires private, or if
the individual is eligible, public copayment for services,
which primarily cover acute episodes.
Mixed Connective Tissue Disease. A rheumatic disease of un-
known etiology, thought to be autoimmune in nature, with
overlapping characteristics of several connective tissue dis-
eases such as Raynaud's phenomena, swollen hands with
sausage-like fingers, weakness and wasting of muscles
close to the body, fever, rashes, joint pain and swelling,
esophageal abnormalities, pulmonary involvement, and
cardiac symptoms. Some patients have lengthy remissions
although proliferative vascular lesions can lead to death.
Multiple Sclerosis. An autoimmune disease in which the
nerves of the central nervous system lose their myelin
sheath in patches, which results in multiple neurological
symptoms such as loss of balance, double vision, partial
blindness, pain in the eye, emotional lability, lack of judg-
ment, forgetfulness, tremors, spasticity, numbness, paraly-
sis, incontinence, and fatigue. It is an unpredictable dis-
ease characterized by remissions and exacerbations that

eventually lead to permanent disability.
Myasthenia Gravis. An autoimmune disease characterized by
muscular weakness due to abnormal neuromuscular trans-
mission. The course of the disease varies, ranging from
mild involvement to life-threatening respiratory crisis.
Peripheral Neuropathy. An abnormal condition affecting the
nerves outside the central nervous system, which causes
sensory, motor, reflex, and vasomotor symptoms.
Photodermatitis. An unusual inflammation of the skin due to
only brief exposure (minutes) to the sun. Photodermatitis
is characteristic in people who have lupus erythematosus.
Premature Ventricular Contraction (PVC). An irregular car-

diac rhythm that may not be medically significant when
only an isolated occurrence but much more significant
Glossary 291
when frequent and recurrent. These PVC's typically indi-

cate cardiac abnormality and sometimes precede ventricu-
lar fibrillation, which, in turn, leads to unconsciousness
and possible sudden death unless life-saving interven-
tions are administered.
Public Assistance. See General Assistance.
Raynaud's Phenomena. An abnormal condition in which the
arteries and arterioles (usually of the fingers) spasm, pro-
ducing a bluish color as oxygen is greatly reduced. It often
occurs in conjunction with connective tissue disorders.
Remission. A quiescent phase during which the symptoms par-
tially or completely fade.
Sjogren's Syndrome. A chronic, systemic, inflammatory dis-
ease of the mucuous membranes with characteristic drying
of the eyes, nose, and mouth. Although it is of unknown
origin, it is believed to be an autoimmune disease and
often accompanies rheumatoid arthritis or lupus erythe-
matosus. Taste and smell may be lost. Teeth may also be
lost. The dryness of the respiratory system readily leads to
infections and pneumonias. Chronic liver and pancreatic
disease often follow. The incidence of lymphoma is greatly
increased in people who have Sjogren's syndrome.
Supplemental Security Income (SSI). A federally supported
and state assisted income transfer program for impover-
ished elderly and disabled people who cannot work and
who meet extensive eligibility requirements.
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Index
acceptance: of death, 246, 247, 249; chronicity, 14, 21-23; effect on rou-
of illness, 46-49, 65, 244, 281n4; tines, 21; recovery stigma,
in, 23;
self, 258 22
accountability for regimen, 157-159 chronology: collapsed, 237; compara-
activities: effect of illness, 56, 76; tive, 202; of illness, 197-201
eliminating, 143; in filled present, colitis, 288
241-242; in intense present, 245- competence, 50, 117
250; limiting, 76; past, 193-195; conflicts, time, 154, 171-172
preempted by illness, 57; preserv- containment of 65-70, 199;
illness,
ing, 136; reduction, 183, 242; packaging, 66-68; passing, 68-70
shared, 95; simplifying, 144; in control, 284nl; of activities, 58; of au-
slowed present, 243-245; vital, 58 diences, 126; bodily, 117; of care,
advocacy, 263, 285n2 282nl; challenged, 122; of disclo-
anger, 46, 51, 52, 137, 187, 226, 244- sure, 119; of emotions, 119-121,
245, 251, 254, 282n3 127-130, 181; of illness, 44, 57,
announcements, strategic, 121-127 212; loss of, 49, 109-110, 185-186,
apnea, 287 215-218, 260, 261; of resources, 64;
appearance: bodily, 70; concern of self, 43; of symptoms, 45, 86,
with, 68 136; of time, 31, 45, 83
assistance. See support crises, 81; continuing, 185; disrup-
audiences, 36-40, 122; control of, tive, 33-35; identifying, 218; man-
126 aging, 85-87; start of chronicity,
autonomy, 27, 259-260; lack of, 84; 12; sudden, 28; temporary, 12;
loss of, 109-110, 112, 260, 262; time in, 33-35
maintaining, 131. See also indepen- CVA, 287
dence
avoidance of disclosure, 110-112, days: bad, 49-50, 51-53, 54-56; eval-
115-118 uations, 49-50; existing in, 185-
190; good, 3, 41, 49-51; one at a
bargaining, 48 time, 169, 178-185, 239, 243,
benefits, disability, 1 283n2; rhythm, 44; routines in, 2,
6-7, 43, 57-58, 82, 237, 249,
carcinoid syndrome, 287 283nl; structure, 55
care. See support death, 178; acceptance of, 246, 247,
cerebral vascular accident, 287 249; awareness of, 14, 99-100, 183;
chronic fatigue syndrome, 287-288 fear of, 98, 125, 156, 179, 251; im-
chronic illness. See illness minent, 255; threat of, 93
307
308 — Index
denial, 16-20, 191; definitions, 17; of friends. See relationships

illness, 16, 20; as label, 17 frustration, 51, 52, 137, 244-245
dependency, 80-81, 102; fear of, 180, future: assumed, 253-254; contin-
251; physical, 1. See also indepen- gent, 284nl; dreaded, 33, 235,
dence 250-251; expanded, 170; identity,
depression, 1, 22, 195, 243, 245, 251, 101-104; improved, 251-253; plan-
254 ning, 178, 190-193; questionable,
diabetes, 288 229; role of acceptance, 48; self in,
diagnosis: and disclosure, 116; evad- 229, 250-256; uncertain, 32, 178,
ing, 131; lacking, 23-25; meaning, 180, 235; vague, 35
18; relief at, 24, 57; serious, 28; as
timemarker, 202, 203 general assistance, 289
dialectical self,70-72 grief, 11, 29
disclosure of illness, 107-133; avoid- grounded theory method, 273-277
ing, 110-112, 115-118; controlling, guilt, 98, 125
119; planning for, 127-133; prob-
lems, 109-110; protective, 119- health care system, 282nl; access to,
121; risk in, 112-119; spontane- 264; economics, 2; profit motive,
ous, 119-121; staging, 129-130; 263; rehabilitation needs, 264;
strategic, 121-127; types, 119-127; structure, 2, 3, 135. See also medi-
and visibility, 111 cal care
discoid lupus, 288 Hodgkin's lymphoma, 289
disruption, 6, 9, 12; in crises, 33-35; horizons, 96; spatial, 50, 52; tempo-
routines, 44; without diagnosis, ral, 50, 52
23-25 hospice movement, 282nl
domino effect, 154, 283n6
effects of illness, 21, 56-64, 76, 257- iatrogenic effects, 289

identity: appropriate, 48; control of,
265
45; establishing, 201; future, 101-
emotions: anger, 46, 51, 52, 137, 187,
226, 244-245, 251, 254, 282n3; con- 104; imposed, 102; past, 101-104;
trolling, 179, 181; fear, 98, 125, 156,
preferred, 15; preservation, 255;
179, 180, 251; grief, 11, 29; guilt, 98,

questioning, 101-104, 219; self, 15,
16, 66, 101-104; social, 15, 151
125; managing, 223; monitoring,
179; negative, 98, 181, 221, 224, 251;
idiopathic pulmonary fibrosis, 289
past, 218, 223, 224-227; power and, illness: acceptance of, 46-49, 65, 244,
281n4; acknowledging, 3, 136,
222; present, 220-224; pride, 166;
reliving, 214-220; and self, 220-
283nl; acute, 16, 73; chronicity, 14,
227; shame, 215, 218, 226, 284n4;
21-23; chronology, 197-201; con-
cealing, 69, 110-114; containment
shock, 11, 15, 28, 29, 128; transcend-
of, 5, 65-70, 199; control of, 44, 45,
ing, 224-227; unfamiliar, 5
57, 212; defining, 16, 36, 40, 67;
emphysema, 288
denial of, 16-20; disclosure of,
events: external, 237; negative, 214-
107-133; effects of, 21, 56-64, 76,
220; positive, 211-214; significant,
257-265; embracing, 65; environ-
207, 210-220, 221, 229
exacerbation of illness, 289 mental, 288-289; episodic, 20, 85-
185-190 87; flaunting, 126-127; immersion
existence, day to day,
in, 5, 73-104, 189, 199, 207, 235;
family. See relationships incorporating, 66, 68; as interrup-
fear, 32; of death, 98, 125, 156, 179, tion, 11-40; intrusive, 41-72; living
251; of dependency, 180, 251 with, 4, 134-166; managing, 57-
Index — 309
58, 82-83, 149, 178, 181; meanings maintaining: current function, 263-
onset, sudden, 27-28;
of, 4, 67; 264; independence, 59, 131, 132,
packaging of, 66-68; passing with, 137, 164, 174, 246
68-70; rapid escalation, 23, 25-27; managing: crises, 85-87; emotions,
reconciling self to, 47-48; recovery, 223; illness, 57-58, 82-83, 149,
12, 13-16; relation to time, 30-35, 178, 181; routines, 137-139; self,
88-93, 105, 173, 236, 243, 244, 248; 178; symptoms, 46; time, 174, 178-
routines, 9, 43, 82-85, 92; social 190
context, 54-55; as temporary condi- Medicaid, 2, 279nl, 289-290
tion, 11-12, 30; trajectory, 289 medical care: access, 59; compliance,
immersion: consequences, 95-104; 14-15, 17, 281n4; contradictions,
in crises, 33, 34; in illness, 73-104, 18; coverage, 59; diagnosis, 18,
199, 207, 235; in time, 87-93; varia- 23-24; escalation, 38; expectations,
tions, 93-95 30; lack of control, 217; noncompli-
immortality, 255 ance, 137; planning, 17; raising
independence, maintaining, 45, 59, hopes, 19; rejection, 262; role mod-
131, 132, 137, 164, 174, 246. See els in, 175-178; system, 261-265
also dependency Medicare, 263, 290
Independent Living Movement, medication, side effects, 56, 57
282nl mixed connective tissue disease, 290
insurance, 59, 74, 77, 263 monitoring emotions, 179
interactional: control, 122, 124, 226; multiple sclerosis, 290
risk, 112-113 myasthenia gravis, 290
interruption, illness as, 11-40; defin-
ing, 23; recovery, 13-16 normalization, 28, 53, 150
intervention, 285n2
intrusion, illness as, 41-72 observers, 36-40, 122, 126
isolation, 135, 235; reducing, 282n2; organization, 138-143
social, 82, 95-99, 101, 236
pacing time, 161-166
juggling time, 161-166 passivity, 257
past: activities, 193-195; emotions,
labeling of denial, 17 218, 223, 224-227; examining, 220;
life: contexts, 135-137; existing day familiar, 233-234; functioning, 22;
to day, 185-190; with illness, 4, identity, 87, 101-104; losses, 240;
134-166; medicalization of, 279nl; recapturing, 193-195; recon-
one day at a time, 169, 178-185, structed, 234-239; resuming, 33;
239, 243, 283n2; remaking, 76, self, 6, 92, 220-224, 231-239;
138-143; simplifying, 143-152; tangled, 231-233
structure, 58-64 peripheral neuropathy, 290
linear temporal world, 284nl perspectives, time, 13, 75, 93-95,
living standards, 145-147 169-195, 283nl
loss, 236, 257-260; of autonomy, photodermatitis, 290
109-110, 112, 260, 262; of control, physicians. See medical care
31, 49, 109-110, 185, 186, 215-218, planning: disclosure, 127-133; fu-
260, 261; in crises, 35; in disclo- ture, 190-193; medical care, 17
sure, 112-119; past, 240; of self, 257
policy, social,
221-224, 257, 258, 259; of social power, role in emotions, 222
contact, 95; and tradeoffs, 151 premature ventricular contraction,
lupus erythematosus, 289 290-291
310 — Index
present: alien, 233-234; dreaded, 34; schedules: controlling, 163; time,

emotions, 220-224; endless, 62; 152-161
filled, 241-242; functioning, 22; im- self: altered views, 229, 233; bound-
probable, 31; intense, 242, 245- aries, 84; concept, 75, 79, 118, 260,
250; overwhelming, 86; relating 279n2, 280n2; constructing, 4; cre-
to, 170; self, 51, 101, 127, 210, 220, ation, 84; dialectical, 70-72; dimin-
237, 239-250; slowed, 243-245; ished, 137, 218, 238; effects of ill-
temporary, 149; unsettled, 33, 35 ness, 257-265; esteem, 224; evalua-
priorities, changing, 14 tion, 50; expectations, changed,
prognosis, disclosure, 131 21, 245; exposure, 121; future,
protective disclosure, 119-127 250-256; identification, 15, 16, 66,
public assistance, 289 101-104; image, 57, 124, 210,
pursuits. See activities 279n2; limits, 49; loss of, 221-224,
PVC, 290-291 257, 258, 259; measurement, 206;
monitoring, 70-72; past, 6, 92,
Raynaud's phenomena, 291 220-224, 231-239; preferred, 118,
reconstructing life, 76, 138-143 238, 251; present, 51, 101, 127,
recovery, 12, 13-16, 30, 246; in 210, 220, 237, 239-250; presenta-
chronicity, 23; meriting, 15; tion, 66, 68; preservation, 70, 123,
timeout for, 14 153; private, 66, 116, 223; public,
regimen, 46, 51, 73. abandoning, 66; real, 15, 194, 221, 229, 230, 247,
115, 156, 157; changing, 159; con- 280n2; redefining, 227; respect,
tradicting, 134-135; focus on, 178; 260; retreating into, 100; retrieving
managing, 137-139, 158; as ref- a past, 14, 21-23, 190, 193-195; re-
uge, 281 n3. See also routines vealing, 108; in time, 228-256; tran-
rejection, 108, 109 scendence of, 224, 257-260; trans-
relationships: abandonment, 125; formed, 201; worth, 45
changing, 63-64, 95, 97, 99; con- shame, 215, 218, 226, 284n4
flict in, 149-150; and dependency, shock, 11, 15, 28, 29, 128
80; and disclosure, 116-117, 130; "sick role," 13
ethics, 2; expectations, 53; family, Sjogren's syndrome, 291
60, 62, 96, 98, 137, 187; lack of con- social: contact, 96, 97; context of ill-
trol, 217; maintaining, 143; measur- ness, 54-55; horizons, 96; identity,
ing, 123; preserving, 131, 182; 15, 151; isolation, 82, 95-99, 101,
problems, 12, 126; pulling in, 81- 236; policy, 257; restrictions, 84;
82; ranking, 82; role in illness, 36- support, 59, 158, 254
40, 56; and self-concept, 230; Social Security, 1, 2
strained, 109, 132; tenuous, 114 spontaneous disclosure, 119-127
relief, 35, 57 SSI, 2, 187, 291
remission, 291 standards of living, 145-147
risk: in disclosure, 112-119; emo- stereotypes, 48
tional, 121; health, 241; interac- stigmatization, 2, 22, 27, 49-50, 66,
tional, 112-113; and rejection, 108 109, 110, 112, 113, 117, 258
role models, 175-178 strategies: living with illness, 134-
routines: accountable, 157-159; 166
chronicity effect, 21; daily, 2, 6-7, stress, 23
43, 57-58, 82, 237, 249, 283nl; ill- Supplemental Security Income, 2,
ness, 9, 43, 82-85, 92; managing, 187, 291
137-139; simplified, 143-152; struc- support, 46; attendant, 74, 84, 150,
tured, 153 165-166; commitments, 125; eco-
Index _ 311
nomic, 59; family, 60, 62, 96, 137, tives, 13, 75, 93-95, 169-195,
187; financial, 61-62, 77, 78; lack 283nl; reordering, 152-161, 248; in
of, 81, 185; in managing, 82, 141; retrospect, 91-92; scheduling,
professional, 128-129; social, 59, 152-161; self in, 228-256; struc-
254 tures, 169-195; temporal
symbols of illness, 27 incongruence, 171-175; unchang-
symptoms, 32; control of, 45, 86; dev- ing, 87-90, 236, 282n5; using, 3;
astating, 82; discounting, 40; expe- waiting, 30-33
riencing, 29; ignoring, 49; intru- timeframes, 62, 154; self in, 229
sive, 44-45; invisible, 56-57; man- timemarkers, 6, 177, 196-197, 260; di-
agement normalization, 28;
of, 46; agnosis as, 202, 203; establishing,
recurrent, 24; undiagnosed, 31-32; 201-207; identifying moments,
vague, 23, 25, 205; visible, 57 207-210; illness, 198-207; as mea-
systemic lupus erythematosus, 289 sures, 206-207; social conse-
quences, 203-204
telling. See disclosure of illness timeout, 172; for recovery, 14, 177;
temporal incongruence, 171-175 for rest, 155
testing, 28-29 tradeoffs, 162, 283n3; simplifying
time: altered, 171-195, 210; bad life, 143-152; time scheduling,
days, 49-50, 51-53; buffer, 33; 152-161

changes, 4-5; chronology, 198- transcendence, 224-227, 257-260
201; conflicts, 154, 171-172; con- trust, 223
trol of, 31, 45, 83; crisis, 33-35; turning points, 6, 210-220, 221, 229,
dragging, 90-91; drifting, 90-91; 258, 260
duration, 88-93, 105, 173, 236,
243, 244, 248; elusive, 29-30; expe- validation: of illness, 24-25, 28; of
riencing, 4, 29-35, 93; filling, 187- past self, 235, 238
188; good days, 49-51; horizons, victimization, 38, 79
239; immersion, 87-93; juggling, vulnerability, 189
161-166; managing, 174, 178-190;
movement of, 280n7; neutral, worth, diminished, 2
282n4; pacing, 161-166; perspec-
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'( c .o n ti h.ue 6 from front flap)
Charmaz crafts her analysis from skillfully
conducted in-depth interviews. She offers a com-
passionate view of her respondents, whose insights

and inventiveness bring their stories to life. Though
these people experience loss, they often discover
new strength and resolve in their efforts to remain
independent. As a result, they may lose physical
abilities, but they find new meaning in themselves
and in their lives.
Jacket design by Archie Ferguson

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KATHY CHARMAZ
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How does chronic illness affect one's self-concept?

How does chronic illness affect one's self-concept?

How does chronic illness affect friends and family?

How does chronic illness affect friends and family?

THE SELF IN CHRONIC

what is life really like when you are chronically ill?

How does having an illness affect one's self-con-

cept? How does the passage of time give rise to

meanings of illness and self? How does chronic

Kathy Charmaz takes a fresh look at the

experiences of people with serious chronic illnesses

such as cardiovascular disease, cancer, lupus, em-

physema, multiple sclerosis, and arthritis. She enters

to understand their feelings, and to empathize with

interpret their experience and reconstruct their

lives. Through their stories she makes visible what

pected, crises and changes occurring in adult life.

Looking at the thoughts, feelings, and actions of

men and women with chronic illness provides a

mirror that reflects ourselves anew.

(continued on back flap)

Rutgers University Press

C. Thomas, Publisher. From The Magic Mountain, by Thomas Mann, trans. H. T.

Credits Continued on Page 312.

Library of Congress Cataloging-in-Publication Data

Charmaz, Kathy, 1939-

British Cataloging-in-Publication information available.

Copyright © 1991 by Kathleen C. Charmaz

Part I Experiencing Chronic Illness 9

Part II Problems in Everyday Life 105

Part III Illness, the Self, and Time 167

Having a serious chronic illness often crystallizes vital lessons

taught me about living with serious chronic illnesses. After

Some years later, my interest in chronic illness and self re-

talked with some participants over a number of years (5-11). It

also differs in that have had informal conversations with many

of them as well as intensive interviews. Further, I have also

tionism and interpretative social science; I examine how people

illness that lead to anchoring the self in the past, present, or

procedures. A short glossary of specialized medical and service

During my work on this study, I have presented numerous

from thoughtful comments and careful readings by David

overdo too much, but if I take it easy and

a lot of my symptoms, they're kind of on and off and sporadic. .

two bouts with about a week to where

Progressive gains. Plummeting losses. Plateaus. At forty-

But then they evaluated me in a year. They were almost . . .

going to take it away from me and then they talked to one of

[that] I can't be something I'm not. I can't go in to [see] a doc-

at me and say, "God, she looks healthy enough, nothing wrong

Living with a serious illness takes effort and devours time. It

fellow I was seeing, and he proposed and so I had to quit

And I'm thinking, "Wait a minute; that's not what I want at

thought to myself, "Gosh, what if, you know, he had a stroke? I

Though Nancy Swenson had little acknowledgment of her

Life was not so peaceful earlier for Nancy Swenson, as will

chronic illness and constructing a self. I study the private face

and downs. A "good" day permits an even schedule and is sa-

ings, and problems removed from conventional adult worlds.