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Psychology & Health: To Cite This Article: Adele Dickson, Christina Knussen & Paul Flowers (2008) That Was My Old Life
Psychology & Health: To Cite This Article: Adele Dickson, Christina Knussen & Paul Flowers (2008) That Was My Old Life
Psychology & Health: To Cite This Article: Adele Dickson, Christina Knussen & Paul Flowers (2008) That Was My Old Life
To cite this article: Adele Dickson , Christina Knussen & Paul Flowers (2008) ‘That was my old life;
it's almost like a past-life now’: Identity crisis, loss and adjustment amongst people living with
Chronic Fatigue Syndrome, Psychology & Health, 23:4, 459-476, DOI: 10.1080/08870440701757393
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Psychology and Health
May 2008; 23(4): 459–476
Abstract
Individual in-depth interviews were conducted with 14 people with Chronic Fatigue
Syndrome (CFS). The interviews centred on the experience of living with the condition
from the participants’ own perspectives. All interviews were transcribed verbatim and
were analysed using Interpretative Phenomenological Analysis. Three inter-related
themes were presented: ‘Identity crisis: agency and embodiment’; ‘Scepticism and the
self’ and ‘Acceptance, adjustment and coping’. Participants reported an ongoing sense of
personal loss characterised by diminishing personal control and agency. An inability to
plan for the future and subsequent feelings of failure, worthlessness and insignificance
ensued. Scepticism in the wider social environment only heightened the consequential
identity crisis. The importance of acceptance for adjusting to a life with CFS was
highlighted. The findings are discussed in relation to extant literature and issues for health
psychology are raised.
Keywords: Chronic Fatigue Syndrome, interpretative phenomenological analysis, loss of
self, identity crisis, coping
Introduction
Chronic Fatigue Syndrome (CFS) is a condition characterised by severe disabling
fatigue persisting for 6 months or more. This fatigue is not the result of ongoing
exertion and is not substantially relieved by rest (Fukuda et al., 1994). Alongside
the fatigue, people with CFS report a combination of fluctuating, chronic and
actually exists (Åsbring & Närvänen, 2003; Deary, 2005; Shlaes, Jason, & Ferrari,
1999), fuelled by controversy over the underlying pathophysiology of the
condition and treatment options. Deary (2005) has argued that the root cause
of the scepticism lies in our failure to see beyond a dualist ontology of CFS,
resulting in a construction of CFS that is associated with ‘hysteria’ (Showalter,
1997) and malingering (Ware, 1992). Deary’s argument might also explain the
stigma that is often associated with CFS (Åsbring & Närvänen, 2002;
Berne, 1992; Cooper, 1997; Dickson, Knussen & Flowers, 2007; Green,
Romei, & Natelson, 1999; Ware, 1992).
Loss of control, biographical disruption and loss of identity are often a
consequence of the onset of the condition. Loss of control has been frequently
reported in the CFS literature, particularly in relation to social life, intimacy in
romantic relationships, identity and self-esteem (Anderson & Ferrans, 1997;
Clarke & James, 2003). As a result of this loss of control, biographical disruption
often ensues. The construct of biographical disruption has been applied to the
effects of other chronic health conditions, and is deemed to occur when the
structures in daily life become disjointed (Bury, 1982). With regard to CFS,
biographical disruption appears to be the result of the transition from a highly
active lifestyle to one that is, of necessity, passive (Åsbring, 2001). When illness is
overwhelming, unpredictable and controlling (as in the case of CFS), it often
causes damage to the self. As Charmaz (1991) noted with regard to other chronic
health conditions, such damage can then create a re-definition of the self (see also
Smith & Osborn, 2007).
Thus chronic illness can force drastic change in terms of biographical course,
particularly in terms of roles and responsibilities, which challenge the individual’s
identity (Corbin, 2003). This biographical change can result in a ‘critical
situation’ (Giddens, 1979) and the disruption of a desired life (Bury, 1982).
Åsbring (2001), with regard to CFS, claims that biographical disruption
generates the transformation of identity into ‘otherness’: the individual
experiences life outside the ‘normal’ self and their ‘normal’ world. Åsbring also
describes a partial transformation, where the individual partly belongs to their life
prior to illness and partly to a life with (or after) the onset of the condition.
However, it is noteworthy that the illness experience itself can sometimes generate
positive change (Åsbring, 2001; Hyland, Sodergren, & Lewith, 2006). Some
individuals, for example, have been found to accept their post-illness identities by
Identity crisis, loss and adjustment amongst people living with CFS 461
care and other treatments such as relaxation therapy and support groups
(Deale, Chalder, Marks, & Wessely, 1997; Fulcher & White, 1997; Wearden
et al., 1998; Prins et al., 2001; Sharpe et al., 1996; Wallman, Morton, Goodman,
Grove, & Guilfoyle, 2004). It is reported that CBT has better improvement
rates (70%) than does GET (55%) but it is not always successful for every
individual (Prins, van der Meer, & Bleijenberg, 2006). With regard to the somatic
nature of CFS, Wessely and White (2004) have recently proposed that only one
functional somatic condition (inclusive of a range of conditions such as CFS,
fibromyalgia and tension headache) exists. However, the authors recognise that
their theory is not popular with sufferers who appear to have a strong emotional
attachment to their illness label and feel that the alternative imposes a psychiatric
aetiology.
A body of qualitative work addressing psychosocial aspects of CFS also exists
(Åsbring, 2001; Åsbring & Närvänen, 2002; Clarke & James, 2003; Clements,
Sharpe, Simkin, Borrill, & Hawton, 1997; Horton-Salway, 2001; Hughes, 2002;
Lovell, 1999; Raine, Carter, Sensky, & Black, 2004; van Houdenhove et al.,
2002; Ware, 1992). These studies have played a key role in highlighting
participants’ illness beliefs (Clements et al., 1997) and the experience of
scepticism and stigmatisation (largely as the result of the contested nature of
CFS) (Åsbring & Närvänen, 2002; Clarke & James, 2003; Raine et al., 2004).
Although these studies have been useful in their own right, they tend to be
discursive in nature (Clarke & James, 2003; Horton-Salway, 2004): in other
words, the central focus tends not to be the ‘lived experience’ of CFS.
In contrast, within this article, Interpretative Phenomenological Analysis (IPA)
was adopted because its phenomenological focus primarily addresses a
hermeneutic of empathy: it seeks to explore the links between what people say
within interviews, and the way they think about their own experiences. It takes,
as its starting point, a position in which the participant and not the researcher
is expert. Its idiographic focus means that overall the participant and her
experience, not the discourse or narrative, is the unit of analysis. The participants’
meanings and understandings, as they relate to participants’ own experiences,
present a rationale for research. Moreover, IPA’s concern with the links between
talk, thought and experience (or behaviour) mean that there is a focus on the
‘wholeness’ of the individuals’ experiences as opposed to focusing on the separate
parts of the phenomenon under investigation.
462 A. Dickson et al.
Method
Fourteen individuals with CFS were recruited from an alternative therapy clinic
(n ¼ 7) or through personal contacts (n ¼ 7). The first author sought participants
from the alternative therapy clinic because she was aware that this was a viable site
from which to recruit people with CFS. A list of names of people attending the
clinic (n ¼ 7) was generated by the therapist. All participants were contacted by
telephone, informed of the research and asked to participate. There were no
refusals. The remaining seven participants had been informed of the research
through friends and colleagues of the first author. All seven of these participants
contacted the researcher and expressed their willingness to participate. Ethical
approval for the research was granted by the host institution. The interviews were
conducted during 2003 until there was saturation of the data.
The inclusion criteria were that participants should be adults between the ages
of 18 and 75 years who had been medically diagnosed by their General
Practioners (GPs) or medical consultant as having CFS. Participants were aged
between 21 and 68 years; there were eight females and six males. Participants
were from various geographical locations in Scotland and were of various socio-
economic status. All participants completed the Centers for Disease Control
(CDC) (1994) diagnostic criteria (Fukuda et al., 1994) which was distributed in a
questionnaire format, devised by the authors for this particular study.
All participants complied with these diagnostic criteria. It is noteworthy that
10 of the 14 participants were actively seeking health intervention at this time.
Each participant was interviewed once by the first author (a white female
academic researcher). The interviews commenced in a private room either at the
alternative therapy clinic (n ¼ 2); in the participants’ own homes (n ¼ 9); at their
place of work (n ¼ 2) or in the researcher’s home (n ¼ 1). The interviews lasted for
between 30 and 90 minutes. There was no recompense for participation.
An interview schedule with non-directive, open-ended questions was prepared
prior to the interviews. Typical questions (or prompts) included ‘Tell me about
your experience of CFS’, ‘What aspects of your life has CFS impacted on most?’
‘In what ways?’ and ‘How have other people reacted to your condition?’
The interview schedule, however, was not followed in any strict or rigid way.
Rather, a process of reflecting and probing was adopted (e.g. ‘You said there
Identity crisis, loss and adjustment amongst people living with CFS 463
that . . .. What did you mean by that?’, ‘How did you feel about that?’) The
interviewer also provided a brief summary towards the end of the interview to
ensure that she fully understood the participants’ views and to provide the
participant with the opportunity to clarify or add any further information. In this
way, the participant was allowed every opportunity to tell their own story in their
own words and to have a central role in the course of the interview, both central
premises of IPA.
Analysis
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Transcripts were analysed manually for recurrent themes using IPA (Smith
& Osborn, 2003). Many themes emerged within individual transcripts and when
the same themes appeared in at least half of the other transcripts, they were
categorised as being recurrent. This was to promote an idiographic perspective
but, at the same time, to counterbalance that perspective with more generic
accounts across the transcripts. It is noteworthy that this selection process
required the interpretation of the researcher. Capturing the meaning of the
phenomenon (to the participant) was central but this necessarily involved
interpretative engagement with the text (Smith, 1996). The extracts presented
herein were selected because they presented the essence of recurrent themes or
because they provided the most powerful expressions of any given recurrent
theme. For more detail on IPA refer to Smith (1996), Smith and Osborn (2003)
and Brocki and Wearden (2006). The analysis was conducted by the first author.
This article highlights three recurrent, inter-related themes: ‘Identity crisis:
agency and embodiment’, ‘Scepticism and the self’ and ‘Acceptance, adjustment
and coping’. These themes will be presented in an order that reflects the
embedded nature of an individual’s experience.
Results
Identity crisis: Agency and embodiment
Overall the participants reported an ongoing sense of personal loss characterised
by profound diminishing personal control and agency. The loss of personal
control was fuelled by the wide-ranging somatic and psychological impairments of
CFS, all of which are reflected within both the CFS literature and CFS diagnostic
criteria (Bates et al., 1994; Fukuda et al., 1994; Jason et al., 1997; Lloyd, Hickie,
Boughton, Spencer, & Wakefield, 1990; Sharpe et al., 1991). Participants
reported that the illness shaped their experiences and controlled virtually every
aspect of their daily lives. Anne’s succinct and pithy quote captures much of this.
In her direct, and perhaps resigned, personification of CFS we see how the illness
has claimed all agency; there is a totality of the illness experience:
‘CFS is a dictator. It dictates my everyday life. It determines what I can and cannot do.
It controls my body and my mind and every part of my being’ [Anne].
464 A. Dickson et al.
For Anne, as the illness controls both her mind and body, we are left wondering
what is left over. When both have been taken away and are under the control of
CFS from where is Anne speaking? The implicit identity crisis peppers much of
the analysis. The paradox of Anne’s absence from her embodied experience, yet
her presence as ‘witness/host’ to CFS was reflected within many of the interviews.
Bartholomew highlights it through a loss of agency. His emphatic yet
straightforward description alludes once again to both the psychological and
physiological aspects of his illness:
‘I had . . . simply, there was simply . . . . nothing left . . . no resistance I repeat, I could have been
robbed by a five year old child and I would have been too fatigued to do anything about it.
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Just hopeless.
Helpless in every way. It was as total as that’ [Bartholomew].
And later . . ..
‘I mean sometimes just a feeling that em . . . I had no purpose. I was an empty shell. I am a
fragment of the man I used to be. I can do nothing now. I’m useless to everyone. I’m useless to
myself. My self-esteem is rock bottom’ [Bartholomew].
These extracts, and their focus upon what the illness has taken away from the
participant, beg the question of what is left beyond the presence and experience of
CFS. There is a sense of identity absence that seems difficult yet important to
articulate (e.g. ‘empty shell’, ‘fragment’). Below Sophia explains her lack of
‘embodiment’:
‘I suppose it’s like being a bird but not being able to fly. You can see all the other birds doing it
and you think ‘Why can’t I do that? I’ve got the wings but I can’t do it’ em, and that’s what it
comes down to, you’re sitting there, you’ve got your hands, you’ve got your mind, you’ve got
your eyes, you can see all these things that you could probably so, like there’s a crossword over
there, I could finish that, but it’s just not possible. You can’t do it. It’s mind-numbingly awful’
[Sophia].
And later . . ..
I felt numb. I was empty. There was this huge part of me that was missing. People talk about a
part of them being missing when their spouse dies after many years of marriage and that’s how I
felt. I felt like part of me had died. I’d have given anything to have it back again. I just wanted to
be me. The old me before I got ill [Sophia].
Sophia’s account focuses on a sense of frustration as a result of her inability to
access her own body, mind and sense of self. Similarly the quote from Scott
below, like Sophia’s in the use of metaphors of death, emphasises an enforced
passivity:
‘It was like a death trap- there was no life going on any more.
There was no way out. Everything I tried to do didn’t work.
So you were trapped. Nothing you did helped you to get better and to get out of it. You were
stuck there until the illness went away’ [Scott].
Scott describes his incapacity to change his day-to-day experiences of ill-health.
His inconsistent use of pronouns perhaps reflects a need to distance himself from
these terrible experiences or his own absence from these experiences. For Scott,
and most of the participants, repeated attempts to improve health had failed.
Identity crisis, loss and adjustment amongst people living with CFS 465
such as the inability to further their education, the inability to further (or even
maintain) their career, the inability to maintain a relationship or to start a family.
Such interruptions led to a progressive sense of failure, worthlessness and
insignificance as the participants’ futures spiralled out of their control. There was
a strong sense of dissonance between participants’ expectations and perceived
norms and the reality of their lives. As Stuart says:
‘When it comes to the bit you think, well, if you actually summed up your life, it’s in absolute
shreds, you’ve eh, you know, you’re in your thirties and your thirties are supposed to be a really
good time of your life, a very productive time at work, productive time socially and relationship
wise and everything, and you’re going along . . . eh . . . and it’s in tatters. You can’t really do
anything you want’ [Stuart].
The process of self-comparison between the participants’ current ‘ill’ self and
their former and desired selves [see Osborn and Smith (1998) and Smith and
Osborn (2007) for similar findings relating to chronic back pain] adds to the sense
of identity crisis. The frequent use of the language of bereavement is suggestive of
processes of mourning and even perhaps the death of anticipated self. The sense
of disparity between past and anticipated self and their current CFS self led to a
loss of self-esteem or self-worth.
This theme has outlined the sense of crisis that many people with CFS report.
For the participants in this study, there was a loss of agency, a loss of control over
mind and body, and a loss of old and anticipated selves. The next theme outlines
how this crisis is moderated by the social context of the person living with CFS.
The combination of this scepticism with the sense of identity crisis outlined in our
previous theme led to the participants further questioning their sense of self.
Given the dissonance between CFS self and previous/anticipated selves, and the
absence of embodied certainty, it does not seem too surprising that participants
sometimes internalised societal scepticism and paradoxically (given the totality
of their illness experience) questioned the authenticity of their own condition:
‘I started to think to myself ‘‘Am I just making this up? Is it all in my head?’’ And I started to
worry about it like ‘‘Am I just using this as an excuse because I don’t like my life?’’ And there’s
nothing wrong with my life but because you’re so low and you’re not your self, these doubts
creep in, you know? Who am I and am I turning into a malingerer?’ [Cynthia].
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Social interactions, so critical in shaping the role of social support within coping
and chronic health literature (Anderson & Ferrans, 1997; Drageset & Lindstrøm,
2005; House, Umberson, & Landis, 1988; Moss-Morris et al., 1996; van Rijen
et al., 2004), became an additional source of distress and anxiety (see also Smith
& Osborn, 2007). As a result, many participants reported withdrawing from social
environments. Implicit within these accounts is some sense of the emptiness of
the CFS experience (the palpable sense of what has been taken away) being filled
with a CFS identity. Cynthia’s earlier question, ‘Who am I?’, can only be
answered with her illness. Similarly, the extract below from Thomas, although
demonstrating isolation and social withdrawal, also speaks to issues of self and
identity:
‘I think with CFS you become very isolated and even though you might be surrounded by a lot
of people, you still feel very isolated and I think that’s to do with people not taking it seriously.
And then realistically, you don’t want to talk to them because if your CFS is part of your life,
part of your everyday life, it’s obviously going to come into your conversation but they hint that
they’re not interested and they don’t believe or accept that it is very much part of your life. So
up theirs’ [Thomas].
The scepticism surrounding CFS seems to be perceived by Thomas as a personal
rejection. CFS has been understood as an integral part of himself. In the
Identity crisis, loss and adjustment amongst people living with CFS 467
extract below we see how, once more, comparisons between selves, both
‘anticipated’ and ‘current’, are used to make sense of the transformations CFS
has brought:
‘Well, to be honest . . . I would probably have been like that myself.
You know, if I’m totally honest with you. Even if I knew that a person had CFS, unless
I actually seen what they were going through 24/7, I would probably have said ‘Ocht, they’re
needing to pull themselves together’ or you know, ‘they just need a right good kick up the
backside’ or something like that. But now that I’ve actually experienced it for myself, my whole
attitude has changed. You absolutely cannot understand CFS until you have experienced it for
yourself. You must have it to appreciate what it’s like’ [Emily].
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expected selves (i.e. as mother and wife). Careful monitoring of such activities
was also reported as a means of coping:
‘Eh . . . . because if you try to do too much then you end up back in bed and then you get on this
downward spiral where you feel more and more useless and more and more helpless and get
into this black hole of a deep depression that you can’t get out of. So for your own mental
wellbeing it’s important to keep goals small and achievable and that keeps you from getting into
that spiral’ [Stuart].
For other participants, the process of realistic goal setting went one step further –
a complete re-appraisal of their lives. In this way, the person with CFS moves
away from the trajectory of anticipated, or expected, self and crafts their own
future as someone living within the limitations set by CFS. Participants reported
changing careers, engaging in new activities, hobbies or routines in order to better
manage their CFS. This promoted feelings of control over their CFS and allowed
for some sense of personal agency:
‘It sounds a bit daft saying that you change your life to suit CFS but if you listen to your body,
monitor your condition and change your lifestyle to control this illness then you have more
control’ [Cynthia].
Or from Angie:
‘Well, you’re forced to re-evaluate your life. Somewhere in the process of being ill and having to
give up everything that you once enjoyed, everything that made you who you were, you have to
re-assess your life, your priorities, what’s important in your life. For me, I learned that being a
sportsperson was important to me, and yes, maybe it did make me who I was for a while, but
now I think I was just lucky to have that for as long as I did. Some people will never have that.
But that was my old life, it’s almost like a past-life now. I don’t think of myself as being like that
anymore. Now my priorities just lie in being healthy and happy. If you’re healthy and you’re
happy, then you’re damn lucky. It’s more than a lot of people have. They are my priorities now,
not sport or competitions’ [Angie].
In this way, acceptance may represent a coping strategy aimed at providing the
experience of positive emotions (Folkman, 1997; Heyink, 1993), or perhaps the
outcome of a process of re-definition (Kagawa-Singer, 1993) or ‘response shift’
(Åsbring, 2001; Sprangers & Schwartz, 1999), in which feelings of self-worth are
maintained during illness by adjusting one’s values and by re-conceptualising
one’s goals.
This theme has shown that accepting the loss of anticipated self, and adjusting
to the reality of a self-living with CFS can be an adaptive approach to living with
CFS. Specifically, realistic goal setting and lifestyle modification re-introduced
Identity crisis, loss and adjustment amongst people living with CFS 469
Discussion
The themes presented in this article touch on constructs described by other
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authors in relation to CFS and other chronic health conditions. For example,
there was a clear dialogue in the present research with other authors work on
biographical disruption (Anderson & Ferrans, 1997; Åsbring, 2001; Schweitzer,
Kelly, Foran, Terry, & Whiting, 1995; Tuck & Human, 1998; Ware, 1998);
scepticism and delegitimation (Åsbring & Närvänen, 2003; Ax, Gregg, & Jones,
1997; Clarke, 2000; Clarke & James, 2003; Cooper, 1997; Deale & Wessely,
2001; Prins, Bleijenberg, Rouweler, van Weel, & van der Meer, 2000); health
locus of control (Rotter, 1954); the traditional construct of learned helplessness
(Carver & Scheier, 1982; Seligman, 1975) and on the use of acceptance to deal
with CFS (Åsbring, 2001). However, our analysis although anchored to, and in
dialogue with, these original constructs, presents a nuanced extension of this
earlier work.
The elements of loss of personal control and agency were apparent in the ways
that participants described their inability to undertake a broad range of both
physical and mental activities. Many described or alluded to a loss of their old
selves while others desired a return to their former pre-CFS identities [as found
by Yoshida (1993) and Carricaburu and Pieret (1995) in the wider illness and
disability literature]. A number of participants went beyond such reports of loss of
control, or loss of self by describing disembodiment: they no longer ‘inhabited’
their bodies or their minds, or they did not have access to them as they had
previously known them. The experience was likened to death, and left them
numb or without feeling. Ultimately, they had not just lost their sense of self, they
had lost every sense of their being – their minds and their bodies – and
consequently, they no longer knew who, or what they were (i.e. in identity crisis).
These experiences were profoundly distressing and disorientating for the
participants and the gravity of the experience is not fully captured by the use of
terms such as ‘learned helplessness’ or ‘loss of control’. For the participants of this
study, the magnitude of the CFS experience is measured in a much more
fundamental metric; the loss of self, the loss of identity and loss of embodiment.
The experience of scepticism was widely reported by participants, and is a core
theme in the CFS literature (Åsbring & Närvänen, 2002; Berne, 1992; Cooper,
1997; Green et al., 1999; Dickson et al., 2007; Ware, 1992). In this analysis,
however, we shed light on what it means to experience this scepticism at a time of
identity crisis, the simplest expression of which may be the acceptance of the
scepticism: if someone no longer has access to their own mind or body, they no
470 A. Dickson et al.
longer have access to their knowledge of the world, and nothing with which to
challenge the ‘knowledge’ of other people. When our knowledge of the world is
challenged to this degree, we can be certain of nothing. If those around us are
expressing scepticism, we have to accept that they might be right. This
internalisation of the ‘knowledge’ of other people is aligned to the processes
described by the self-categorisation theorists (Turner, 1984; Turner, Hogg,
Oakes, Reicher, & Wetherell, 1987), but the distress experienced by our
participants at these times underlines the desperate position many were in: they
did not have alternative identities from which to choose. Overall, the findings
emphasise the need to consider CFS within the socio-cultural context in which it
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is experienced: people with CFS may internalise scepticism and even begin to
question the authenticity of their condition. Scepticism undoubtedly can
contribute to disruption in the CFS sufferer’s life and may even heighten the
ontological crisis of self.
A crisis is, of course, time-limited. While our participants may have visited and
re-visited times of crisis, many thankfully moved on from that. It is noteworthy
that many of the participants discussed their identity crisis in the past tense and
there appeared to be some re-emergence of agency as the participants reflected
back on their identity crisis. In response, acceptance was seen by many
participants as being the first step to some kind of recovery. However, this
acceptance was not generally spoken of in the first person, in positive terms or
even in terms of equanimity; rather, participants appeared to be ambivalent or
equivocal in their descriptions of acceptance. This is perhaps unsurprising when
one considers that this acceptance was often hard-won, after months or years of
struggle to understand what was happening to them. While acceptance allowed
for the integration of CFS as part of a new self or identity (as found by Åsbring,
2001), findings in the present study go beyond this to highlight that the process of
acceptance must also have involved ‘re-embodiment’ and perhaps a re-entry into
a mind: one cannot accept a body or a mind without somehow being part of it.
The participants had to learn to trust these ‘new’ minds and bodies after periods
of crisis, typically through fulfilling tasks or behaviours associated with the roles
or identities that they used to inhabit: ‘play acting’ while they tried to find out
who they actually were. So this acceptance was much more than simply accepting
the limitations imposed by CFS: it encompassed accepting ‘new’ entities (bodies
and minds) in addition to new identities. From the participants’ accounts in this
study, this is likely to be a slow and painful process.
In contrast with the extant literature, this study adopted an IPA approach to
understand the CFS experience. While there are other authors who have also
used qualitative methods (Åsbring, 2001; Clements et al., 1997; Lovell, 1999;
Raine et al., 2004), this is the first to adopt an IPA approach. The use of IPA in
this study elicited rich, insightful experiential accounts prioritised by the
participants themselves. This may account for the emphasis on loss of personal
control and agency and the identity crisis reported by participants in the present
study.
Identity crisis, loss and adjustment amongst people living with CFS 471
interview, particularly when they were talking about loss. When this happened,
the participants were encouraged to suspend the interview and the interviewer did
not continue with that line of questioning. While this approach was in adherence
with the researcher’s ethical contract, a full exploration of emotions, and emotive
experiences, may have been limited. Fourth, we only conducted one interview at
one particular point in time. It would perhaps have been useful to interview at a
second point in time to explore how the course of the illness progressed and
indeed, to determine how the illness experience changed over time. However,
data saturation had been reached and we are confident that a full range of issues
have been raised and explored. Finally, this article only represents perceptions of
their experiences – the findings are specific to this particular group of people with
CFS and cannot be generalised to the wider CFS population. Further qualitative
research taking a longitudinal approach to the experience of loss, adjustment and
coping in CFS is required in order to tailor support to the needs of people living
with the condition and ultimately improve their overall quality of life.
Acknowledgements
We thank all of the participants for their time and co-operation and the reviewers
and editor for their comments.
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