British Journal of Pain 2015 Osborn 65 83
British Journal of Pain 2015 Osborn 65 83
British Journal of Pain 2015 Osborn 65 83
Jonathan A. Smith
Lkpartment of Pfycbofogy, Uniwfity of Sbeffifd, W u t m Bank, Sbefifd SIO 2Te UK
Objectives. Chronic low back pain is a major health problem and one where pain,
physical impairment and biological pathology are only very loosely correlated). It is
considered that the experience of pain, its distress and disability is mediated by its
meaning to the sufferer. The intention of this study was to explore the sufferers’personal
experience of their pain.
Method. Semi-structured interviews were carried out with nine women pain patients.
The verbatim transcripts of those interviews served as the data for an interpretative
phenomenological analysis.
Results. Four themes emerged which are described under the broad headings:
searching for an explanation; comparing this self with other selves; not being believed;
and withdrawing from others.
Chronic lower back pain is a major health problem and produces a demand on the medical
health services which cannot be satisfied as 85 per cent of cases are not amenable to a
diagnosis requiring the attention of a medical consultant (Clabber Moffat, Richardson,
Hubner considered that pain challenged the sufferers’ meanings about their life and in so
doing isolated them from those around them. To be in pain, involved ‘being separated,
being alone. At no time are we more alone than when we are in the grip of pain’ (p. 447).
LeShan (1964) worked with patients in severe pain of long duration and he described
the relationship between chronic pain and meaning as problematic. He felt their chronic
pain was typified by ‘utter senselessness’and ‘meaningless’. The attempt to gain control
and understanding of what is senseless prompted LeShan to compare chronic pain with a
nightmare, its only adequate expression-a scream.
Pain is now both defined and recognized as a subjective experience and this has had
important implications in its study enabling a greater focus to be directed towards
phenomenological and contextual influences (Anand & Craig, 1996;Encandela, 1993).
Despite such recommendations, the number of published empirical studies on the
personal meaning of pain is limited, and research is most often to be found within the
medical sociology literature (e.g. Baszanger, 1992;Bendelow & Williams, 1995;Bury,
1988). This study is concerned with and aims to explore explicitly the psychological
processes which determine and maintain the dynamic relationship between the partici-
pants’ chronic pain, distress and disability. It therefore adopts a phenomenological,
‘insider’s perspective’ (Conrad, 1987).At the same time the paper is neither a first-hand
personal account nor a second-hand clinical case report. The specific methodological
approach adopted is interpretative phenomenological analysis (IPA) (Smith, 1996a).IPA
is committed to understanding and foregrounding the patient’s perspective but recog-
nizes that this is only possible through the interpretative analytic work of the
investigator. The published report can therefore be considered as a co-construction
between participant and analyst in that it emerges from the analyst’s engagement with
the data in the form of the participant’s account. IPA is an idiographic qualitative methodology
which involves the analysis of verbatim transcript derived from indepth semi-structured
interviews with participants (Smith, 1995). If the meaning of pain to the patient is to be fully
explored then we would argue such an intensive qualitative approach is required.
Method
The data set for this study consists of transcribed semi-structured interviews with nine women who attend a
hospital out-patient back pain clinic.
Each participant attended the clinic following a referral from her general practitioner and was considered
on assessment to have chronic back pain with no treatable organic pathology but with excessive distress and
Validity
Validity, and the exercise of sufficient rigour to establish the credibility of qualitative study is considered to
be no less essential than in any other form of research but it is important that the criteria by which it is
judged are appropriate as qualitative inquiry has different epistemological roots to quantitative methodology
(Smith, H a d & Van Langenhore, 1995a, b). A number of authors have attempted to explicate alternative
ways in which the validity of qualitative research can be assessed (Conrad, 1990; Lincoln & Guba, 1985;
Smith, 19966; Stiles, 1993). Conrad (1990) makes a distinction between the assumptions of qualitative and
quantitative research in regard to generalizability suggesting that when considering a qualitative study,
rather than looking at sample size, statistical power or participant selection the work should be measured by
the applicability of the concepts. For example, how would the concept of ‘uncertainty’, which is referred to in
this study help articulate aspects of the chronic pain experience in other situations.
Smith (1996b) suggested several criteria to assess the internal validity and reliability of qualitative
research. Two important ones are: internal coherence and the presentation of evidence. Internal coherence
refers to the need to concentrate on whether the argument presented in the study is internally consistent and
justified by the data. In addition Smith proposes that suf6cient verbatim evidence from the participants
should be presented in the paper to allow the reader to interrogate the interpretation.
As a check on the analysis, the first three transcripts were looked at independently by the second author.
After this the two authors discussed their readings of these interviews and came to an agreement on the theme
categories before analysis proceeded onto the subsequent transcripts. At every stage of the project the second
author acted as a check on the emergent analytic account.
It is important to note that these procedures-both on the part of the analysts and of the paper’s readers-
are not intended to produce a single definitive reading: e.g. the two investigators were not aiming to produce
Analysis
This section presents the four superordinate themes that emerged from the analysis,
which were: searching for an explanation, comparing this self with other selves, not being
believed and withdrawing from others.
The first theme, ‘searching for an explanation’, sets the scene for those which follow as
it articulates the participants’ attempts to understand what is happening to them and is
a prerequisite for the subsequent self-reflection. Because such questioning recurs
throughout the analysis, it is only presented briefly at the outset.
Searcbing fw an explanation
Participants were not asked specific, closed questions but simply to describe their pain
and the various ways it had affected them. They showed a strong motivation to
understand and explain their situation, to know ‘why?’:
I just keep asking myself why the pain is there and I haven’t got an answer. I don’t know how I should
feel really it’s just that I don’t think it should be there why should I have it? I would have thought that
after all this time it should have eased up and gone away but it hasn’t (Linda).
Participants regularly stated they simply could not ‘believe’that nothing more could
be done to relieve their pain. There was a marked contrast between their preoccupation
with their pain and their inability to account for its chronic presence. Despite their long
history of pain and extensive contact with the health service they neither felt informed
about their condition, nor able to influence it. Their pain was often felt to act of its own
volition. ‘It just comes and goes when it wants really (Alice) ’.
Linda’s account of her situation suggested that despite wanting to understand why she
had chronic pain, she could not; to her it was ‘unbelievable really’. This was not a simple
account of ignorance but a profound state of bewilderment as she failed consistently
to understand why she should be suffering. As the best efforts of others had failed, she felt
she could only blame herself:
I’m sort of mad at myself I start banging things and getting so aerated with myself that it’s there and I
can’t get it to go away.
Becky also had no answer as to why her pain remained, except to imagine the presence of
physical damage or deterioration:
Well I always thought you had pain to tell you when there was something wrong.
Participants could not explain the persistence of their pain in any manner which was
meaningful to them beyond the notion that ‘there was something wrong’, something
biomedical which demanded attention. Their disbelief and bewilderment prompted
frustration, anger and, in Becky’s case, despair:
But I don’t know why you have to keep suffering it and suffering it and suffering it for ever and ever.
Linda could not do the things she felt she ‘should’ be able to do like other women of her
age who were active and enjoying life. Her comparison was not just of reduced mobility
but of the denial of pleasure in activity. Others her age could enjoy their life and celebrate
it free from pain, ‘you can see them flying their kite’, and this emphasized her feelings of
loss. In one passage, Linda recalls a description of her pain-free self, set amidst her
immediate family:
I just think I’m the fittest because there are 3 girls and I’m the middle one and I thought well I’m rhe
fittest and I used to work like a horse and I thought I was the strongest and then all of a sudden it’s just
been cut down and I can’t do half of what I used to do.
Linda’s description of her loss was exacerbated by the recall of an idealized past where
she was not only fit, but the ‘fittest’, and worked not just hard, but ‘like a horse’. As she
anticipated the future, Linda was afraid that she could only worsen progressively. She
could not predict her future and emphasized her pessimism by her comparisons with two
people, her mother and a school friend, who both died in distressing circumstances. She
admitted that neither of them had chronic pain but could not guarantee that she would
not share their fate:
She was a school mate and she was 15 month older than me and it was last year she started, I don’t
know what she died of she was getting these aches and pains I just don’t want it to be any worse as I
don’t want to be pushed round in a wheel chair.
The same uncertainty described earlier is what leads Linda to have such a gloomy
perception of a possible future. Gail also described her situation as one where continual
pain had eroded her mobility but responded differently to the comparisons she made with
others:
When I see all of my friends, I saw one running for the bus the other day I thought Oh my God it’s
ages since I had a good run or a good walk, you know. So for about 5 minutes I felt sorry for myself,
and then I saw somebody else in a wheelchair so you know, I’m not quite as bad as that.
Through comparison, participants often ranked themselves against others and this
served to highlight their loss or disability. Linda felt demoted within her family whilst,
for Gail, although she felt better off than someone in a wheelchair she became
embarrassed when considered alongside her 81-year-old mother-in-law:
You think oh well can I make it over there or shall I say no we’ll leave it for another day. I feel so stupid
especially when my mother-in-law is 81 and she’s trotting about and I am hobbling.
Other participants related similar comparisons. Their social order had been disturbed
and in attempting to re-establish their personal status, participants, like Gail, often took
refuge in thinking of those in a worse situation than themselves:
I try to tell myself I’m luckier than a lot of people, you know I haven’t got cancer (Ruth).
However, the use of others as an aid to resisting the sense of decline and loss that
pain provided was equivocal and in some cases detrimental, serving only to exacerbate
and define their distress. Participants’ uncertainty in their prognosis handicapped
any compensation that a ‘worse world’ offered. When Linda witnessed those
more disabled than her she felt she may be looking at herself in the future. ‘I just don’t
want it to be any worse as I don’t want to be pushed round in a wheel chair’. Dottie also
admitted that, although she looked at others in a worse position it could not compensate for
her own sense of deterioration and only increased her fear for the future:
I’ve done heaps more things than other people have done so I think well, I would, you always think
well there’s loads of people far worse off than you you know so you try to think of other people who are
permanently in wheelchairs, and it’s supposed to make you feel better which in a way it does but
basically its frightening.
This comparison with others who were more unfortunate was intended or considered as
a strategy for enhancing self-esteem but often turned into a reinforcer of despair. Chronic
pain promoted distress in each participant when they recalled how they were before it
began and a sense of grief pervaded their accounts. Although a few took pride in their
ability to cope, they often defined themselves as bereaved.
Nelly believed she had lost everything, her comparisons were global and catastrophic,
whilst Mary-Ann was more operational and explicit about the change she had experienced
and revealed how her pain frustrated her personally:
It’s stopped everything, it’s stopped my life completely (Nelly).
I can’t do what I used to do I’m not one for staying in house if I can get away with it I go out I don’t
like stopping in house (Mary-Ann).
As we have already seen with Linda, when participants reflected on their situation they
often recalled a better time, a nostalgic time associated with a better sense of self.
Memories were recalled to help maintain some morale in the present:
When you don’t feel you have a future, you live in the past. (Rachael).
Participants often referred to a past where they were as they had always wished to be,
fit, active, able to stay slim, interesting, and sociable. Alice grieved for her personality;
she wanted to be the ‘old Alice’, the Alice who could exercise regularly to keep her weight
The nostalgic recall of the past provided some comfort but was again a comparison that
proved to be equivocal. The idealized accounts of the past served as a painful index of
what had been lost, and what now had to be endured on a daily basis, rather than as a
haven of reassurance and source of self-regard. The strength of their loss was accentuated
by the fact that the past-self was often considered to represent the real self, replaced
irrevocably by a new false persona:
You feel like just not particularly giving up but you don’t fef thrpcrson that you ure [author’s emphasis]
that you’re capable of feeling or capable of doing basically. It makes you feel a bit down and a bit
miserable (Dottie).
‘The person that you are’ is the person Dottie was in the past, the person without pain.
Through their selective use of social and personal comparison participants highlighted
the impact of their pain on their self-regard and the equivocal nature of their attempts to
cope with its imposition. Pain denied them the chance to be who they once were and
preferred still to be. Their contemporary self-regard contrasted with a nostalgic recall of
their past and those around them, and their comparisons served almost inevitably as an
index of their sense of threat and loss. Attempts to buttress self-esteem by comparison
with those more unfortunate often proved counterproductive and served only to remind
participants of their own gloomy prognosis.
The participants felt a continual need to justify their pain as ‘real’,that is not in any way
psychogenic which was synonymous with ‘mad or bad’:
It’s quite embarrassing because its nor something that you can see and I do feel guilty, I know that my
back really does hurt and I’m not making it up and I feel sort of angry that I can’t do it and I think well
I wish I could just prove to them that my back really is bad and that I really must not do it, because if I
do I put myself back weeks (Dottie).
In the absence of any recognition that their pain could persist, participants were by
default required to be defensive about their condition, but were unable to make use of any
credible explanatory story and as a consequence were often frustrated:
You feel as though no-one believes you, unless people who have got bad backs, it’s only them who’d
believe you (Alice).
Each participant’s account exposed her awareness of the threat of rejection, not just
because she was a burden and unproductive but because she might be disbelieved. In
Gail’s case, the lack of credible evidence prompted a feeling of guilt that others suffered
too.
Mary-Ann was concerned with being judged as ‘useless’ because she could not look
after her family. This was a judgment she endorsed herself as, in common with Nelly and
other participants, she felt uncomfortable at being the recipient of care, unable to
reciprocate:
I know I am ill, but I think well why should I have to put that on to somebody else’s shoulders I don’t
want people to look after me and I know they love me but I don’t want it. It’s degrading (Nelly).
Appearing healthy or mobile whilst remaining in pain was problematic and participants
felt obliged to appear ill and disabled to satisfy the requirements of others. Unfortunately,
appearing ill left them feeling equally as prey to the consequences of pity and condemna-
tion. Pity to Nelly was a stigma. It degraded her, challenged her place in her social world
and was incompatible with how she wanted to view herself, or be seen by others:
I just want to say ‘hello’, you know, ‘how are you’ and I go ‘alright thanks’. Not look at me as though
I’m a cripple. I’m not a cripple.
The ambiguity of pain behaviour and the lack of understanding in others left the
participants feeling vulnerable to being misjudged or rejected. The suspicion they felt
they were under often drove them to appear more in pain than they needed to and in each
case they felt their pain denied them the opportunity to relate to others free of its
influence.
’Any text held within brackets represents clarificatory information supplied by the authors from the wider transcript to
assist the reader.
They felt a burden to other people and there appeared to be no agreed way of relating to
others that they could employ. It was easier for them to conceal their condition than to
rely on the understanding of others. For Gail, rather than explain that it was her pain
that caused her to avoid social events, she found it easier to lie and risk appearing
unsociable:
If anyone asks me if I am going anywhere, come on, no. Rather than tell them why [the discomfort of
pain] I just say I can’t be bothered they probably think I’m a bit of a misery it’s better than going out
with them and spoiling their fun.
Misery and being boring with little to talk about except pain was felt by the
participants to be unacceptable in company and they withdrew from social contact to
avoid the potential for any embarrassment or rejection:
But I mean we just don’t go, we won’t go anywhere now because of that I get too embarrassed and I
just hate being in company and you always get onto that subject [pain]. And if you’re out for social
evening the last thing people want to hear is what your misery is, so I just, that’s why we don’t go out
that often (Becky).
There was a tension between the participants’ need to withdraw from other people and
their fear that this would leave them isolated or abandoned. They felt their relation-
ships were at risk and were aware of the limits of others’ compassion. Ruth admitted
how before her pain she used to avoid anyone who appeared unwell as she could not
tolerate their misery, and she now hides her own distress so as not to prompt others to
reject her:
I’ve been around poorly people all my life and I think I get a little bit n&ed off myself and I cross the
road cos I’ve thought, oh gosh, I can’t stand M a so and so today and she may be a really poorly woman,
this is why I don’t want to burden anybody else because they must feel just the same as I do.
When in public, Linda not only felt easily irritable but also conspicuous and now
prefered not to go out. Her social world could not accommodate people who had chronic
pain and required supportive chairs or who needed to move constantly or lie down if
necessary. Her disability was in part mediated by social acceptability and appearances:
I didn’t even go out Christmas or New Year because I knew what it would be like, there’d be no sitting
down because it would be all packed and there’s no way I’d like to stand up and if there were a seat I’d
have to get back up so I can’t remember the last rime we went out.
Participants felt that when in public they could neither afford to show their distress,
nor appear healthy and mobile. Their social world which, prior to their pain, they recalled
nostalgically was now transformed from a sanctuary and supportive network to some-
thing aversive and threatening. Regard and respect had been replaced by a perception of
disgust or pity. Participants felt trapped, unable to secure the understanding of others and
retreated to the safety of their own company, effectively cutting themselves off from any
benefit of social support.
The participants in this study were grossly dissatisfied with their understanding of their
illness and exposed the inadequacy of their own, primarily medicalized, illness repre-
sentations. There was a contrast between the reality of their chronic pain and their lack of
any useful framework to explain its chronic nature.
The participants’ frustrations highlighted the dominance and essential weakness of the
application of a purely biomedical model in their attempts to conceptualize their
situation. Such medicalization of our understanding of our bodies is referred to
extensively in the medical sociology literature (Bendelow 8i Williams, 1995; Frank,
1990) and is shown in this study to be a major impediment to the participants’
endeavours to understand and accommodate to their pain. To date their efforts to
understand the ambiguity and uncertainties of their pain had had only punitive and
disabling psychological and social consequences. Without an explanation they could
understand, they could not establish any basis for taking therapeutic action, retain a sense
The need to reconstruct or reshape a self-concept in the face of the impact of a chronic
illness has emerged as a theme in many recent studies on a wide range of chronic
conditions. For example, Kelly (1992) and Yoshida (1993) worked with patients
enduring radical surgery, and spinal cord injury and each emphasized the problematic
nature of the contrasting impact of the condition on the individual’s private self and
public identity. For the participants in this study, any positive self-image had faded to
become the stuff of nostalgia. They retreated into their past to maintain some self-regard
in the face of their experience of chronic pain. However, the focus on an idealized past
only appeared to amplify their sense of loss.
Comparison with others is considered to be instrumental in the formation of attitudes
(Festinger, 1954)and utilized to cope with uncertainty and anxiety when information is
limited, as in the case of chronic illness (Molleman, Pruyn & Van Knippenberg, 1986).
Festinger’s theory suggests that people need to have stable appraisals of themselves and
that in the absence of more objective measures will resort to social comparison.
Studies have suggested that downward comparisons with those considered to be worse
off or with an imagined ‘worse world’, can promote positive affect and well-being in
individuals under stressful conditions by enabling them to resist the erosion of their self-
regard (e.g. DeVellis et a f . , 1990;Taylor & Lobel, 1989).However, other studies such as
those by Buunck, Collins, Taylor, Van Yperen & Dakof (1990)and Hemphill & Lehman
(1991)have suggested that the relationship is neither strong nor direct and that the
comparison with those in a ‘worse world’ can also promote negative affect under certain
conditions. The downward comparison with ‘worse worlds’ has been identified as
problematic in a number of chronically ill populations (Affleck, Tennen, Pfeiffer & Fifield,
Bury (1988)emphasized the lack of any social stability for the chronically ill as each of their
relationships is put at risk; ‘relationships do not guarantee particular responses’ (p.92).
Although stability could be re-established, to the sufferers it often felt precarious at best.
In common with the experiences of people with chronic illness related by Radley (1994),
the participants endeavoured to continue to live in their social world of healthy people, often
appearing and trying to appear healthy themselves, but failing habitually to live up to the
expectations and responsibilities implicit in that world. As a consequence they were often
both self-critical and defensive. Unable, in their Uncertainty,to justify to others or themselves
why they should remain in pain, they felt vulnerable to shame and disapprobation.
Pain behaviour has been described as a form of attention seeking maintained by
secondary gain (Fordyce 1976; Heaton, Getto, Lehman, Fordyce, Brauer & Groban,
1984). The participants in this study seemed to feel obliged to appear ill as any
appearance of good health was considered by others as evidence of unreal, invalid pain or
malingering. Rather than seeking attention, participants appeared to be both deflecting
any potential criticism and conforming to the expectations of others in relation to the
identity of those who claim to have pain. No reward or understanding was felt by those
who whilst remaining in pain, attempted to improve their health, appearance or
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