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Psychology & Health

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‘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
a b b
Adele Dickson , Christina Knussen & Paul Flowers
a
Department of Psychology , Napier University , Edinburgh, UK
b
Department of Psychology , Glasgow Caledonian University ,
Glasgow, UK
Published online: 08 Apr 2008.

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

‘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
Downloaded by [Washington University in St Louis] at 10:23 07 October 2014

ADELE DICKSON1, CHRISTINA KNUSSEN2 &

PAUL FLOWERS2
1
Department of Psychology, Napier University, Edinburgh, UK and 2Department of
Psychology, Glasgow Caledonian University, Glasgow, UK

(Received 18 December 2006; in final form 18 October 2007)

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

Correspondence: Adele Dickson, Department of Psychology, Napier University, South Craig,

Craighouse Campus, Edinburgh, EH10 5LG. Tel.: 0131 455 6237. Fax: 0131 455 6306. E-mail:
A.Dickson@napier.ac.uk

ISSN 0887-0446 print/ISSN 1476-8321 online ß 2008 Taylor & Francis

DOI: 10.1080/08870440701757393
 460 A. Dickson et al.

concurrent symptoms, including self-reported impairment in concentration and

memory, sore throat, headache, swollen glands, anxiety, depression and muscle
and joint pain. Prevalence of the condition is estimated at
0.3–0.6% of the
population (Campion et al., 1998) and CFS is most commonly found in females
between the ages of 20–40 years (Pleby, 1999).
CFS has gained the reputation of being a ‘contested’ syndrome (Cooper, 1997)
since there is no definitive biological marker or physiological indicator for the
condition (Barsky & Borus, 1999; Broom & Woodward, 1996) and no obvious
causes of impairment (Cooper, 1997). This has resulted in scepticism (in the
media, the medical profession and society at large) as to whether or not CFS
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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

replacing their former activities with new alternatives, as noted by Gullacksen

(1998) with regard to the experience of chronic illness and disability.
Much of the existing literature regarding CFS is quantitative and has centred
on issues of therapeutic intervention (Butler, Chalder, Ron, & Wessely, 1991;
Friedberg, 1996; Friedberg & Krupp, 1994; Lloyd et al., 1993; Moss-Morris,
Petrie, & Weinman, 1996; Surawy, Hackmann, Hawton, & Sharpe, 1995) and on
the somatic nature of the condition (Lewis, Cooper, & Bennett, 1994; van der
Linden et al., 1999; Wessely & Sharpe, 1995; Wessely & White, 2004; Wessely,
Nimnuan, & Sharpe, 1999). Cognitive Behavioural Therapy (CBT) and Graded
Exercise Therapy (GET) receive support when compared to standard medical
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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.

Indeed, health psychology is asserting that the psychosocial experience

of chronic illness is equally as important as its aetiology (Ogden, 2002). Both
modern health psychology and IPA perspectives employ a holistic approach
(the notion that the mind and body are integrated) and as such, focus on the
integrated self as opposed to the divided self. Health psychology (like IPA) also
prioritises the role of individual beliefs and experiences of illness as well as
advocating that the body, the mind and the social world interact. Both health
psychology and IPA research, therefore, share the belief that the person is both
embodied and embedded within a wider social world. It is to this world and these
connections that this article turns.
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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

This resulted in a futile battle to improve health and consequently, a sense of

hopelessness:
‘I felt kind of . . . it was a feeling of hopelessness I think, I think that’s what it was, that in the
past I’ve been very tearful, very upset and kind of semi-depressed I suppose with this dark cloud
where there’s no hope or anything like that. I suppose I felt useless and it came from the illness
taking control and nothing helping me to feel better. I fucking hated it’ [Thomas].
Given the sense of identity crisis outlined above, and indeed perhaps as
a consequence of the diminishing sense of agency and personal control (and
feelings of hopelessness), participants reported a loss of the ability to make plans
for their future. Participants reported interruptions to their anticipated futures
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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.

Scepticism and the self

In a previous paper (Dickson et al., 2007), we reported difficulties in social
interactions where the apparent disparity between a stable illness identity and
labile symptoms led to scepticism within the wider society for CFS sufferers. This
theme extends our previous findings by exploring the role of this scepticism upon
the CFS sufferer. Generally, participants reported that other people believed that
they were using their CFS as a means of escaping mundane responsibilities and
that they were simply exaggerating their condition:
‘Well, people thought you were a malingerer . . . . That you were ‘at it’ and there was this idea
that you were just lazy, or whatever, or you didn’t want to work or anything and that you were
using it as an excuse’ [Kelly].
 466 A. Dickson et al.

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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It appears, therefore, that there is a strong relationship between external

scepticism and further crises of self. Arguably, the participants did not have the
sense of self or self-esteem to defend themselves, to authenticate their illness.
Scepticism appeared to lead to the further dissolution of sense of self.
Consequently, many participants reported finding it difficult to maintain a
social life and could articulate a sense of feeling obliged to ‘perform’ their former
pre-CFS selves:
‘I didn’t want to go out because I didn’t know how to behave. I didn’t know who I was anymore
and I was always conscious of other people judging me. I had to put on a face and pretend to be
well and things because otherwise, the eyes would roll if I talked about how I was really feeling’
[Angie].
These dynamics led to participants questioning the value of friendship and social
interaction:
‘It’s like what price is friendship you know? What do I have to do to stay friends with these
people and at what cost to my health?’ [Rosemary].

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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This acknowledgement of the validity of scepticism serves to stress

the authenticity of CFS. Moreover, Emily’s account illustrates a further
transformation of self. Emily has become more open-minded and less prejudiced
as a result of CFS.
This theme has shown how external scepticism about the nature of CFS can be
both internalised and resisted. Identifying with CFS, social withdrawal, seeking
isolation and performing ‘expected/old’ selves all illustrated potentially adaptive
responses to the social context of living with CFS. The final theme goes on to
explore other means by which the participants coped with CFS.

Acceptance, adjustment and coping

Given the crisis in identity outlined earlier, and the associated diminishing sense
of personal control, ‘acceptance’ was a fundamental component in shaping
participants’ adjustment to living with CFS. The process of acceptance was
facilitated largely by time and many participants shifted from accounts that were
predominantly in the past tense, or concerned the past, to accounts of more
recent coping behaviours. Indeed, at the time of the interview, some of the
participants continued to employ certain coping strategies, particularly during
times of relapse.
More specifically, personal acceptance promoted a sense of closure for
participants who recognised a need to move forward with their lives. This
inevitably involved a shift towards accepting their illness identity (or their current
CFS self) as opposed to grieving the loss of their anticipated, or pre-CFS, selves:
‘It’s all about accepting the illness and learning to deal with it. Accepting it stops you from
feeling down in the dumps and it helps you to just take each day as it comes. That helps a lot.
You know that you’re going to have good days and bad days and that people don’t understand
what you have but you’ve just got to get through it. There’s no point in moping around, you
just have to accept it and move on. And that attitude helps you to recover. So yeah, just accept
that you have it, adapt your life and move on. that’s the key because once you’ve accepted
something, it’s much easier to deal with’ [Rosemary].
Rosemary highlights the central role of acceptance in adjustment to a life with
CFS. She charts a practical, matter-of-fact process of adjustment, or coping,
which stresses experiential learning. Many of the participants described this sense
of gradual learning, which often began with an acceptance of the limited scale of
potential change rather than the damaging impact of failing to change major
 468 A. Dickson et al.

aspects of life. Small, achievable tasks boosted self-morale and self-efficacy, as

Pamela explains:
‘It’s about taking baby steps and making goals em . . . but they have to be realistic so maybe try
to cook dinner or do the food shop or something small and you feel great when you do it. You
really get a boost from achieving something and you feel you have value because you cooked
your wee boy’s tea or your husband comes home to a well-stocked fridge so it makes you feel
better when you do something a wife should do or a Mum should do..so..yes’ [Pamela].

It appears that achieving goals (irrespective of how small) boosted participants’

self-esteem and self-worth. From Pamela’s account, setting and achieving these
small goals closed the gap between her current self and her anticipated and
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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

a sense of personal control, self-esteem and self-worth for the participants.

However, within this theme and its concomitant extracts there is also a tangible
sense of ‘distancing’ and some sense of the participants being removed from their
own accounts. None are solely in the first person and all are generalised to some
extent. Their reliance on third person narrative suggests that there is more
occurring here than choice of pronoun.

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

Indeed, comparable findings of identity crisis have been reported elsewhere in

the chronic illness literature, most recently by Smith and Osborn (2007), among
people with chronic benign low back pain. For example, the ongoing, futile battle
to preserve the pre-illness identity (and consequently self-worth and esteem) is
graphically presented both here and by Smith and Osborn. Ongoing comparisons
of the pre-illness identity with a new, enforced illness identity led to both groups
of participants surrendering their former sense of self and agency. Both papers
highlight the role of the psychosocial environment in exacerbating chronic illness
and promoting social isolation. In both groups, there is a sense of participants
having to slowly re-build their lives and search for new identities following the
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destruction caused by their chronic conditions. However, in contrast with

the accounts presented here, Smith and Osborn (2007) found that shame and
self-loathing were core features (graphically described) of their participants’
accounts. This contrast may reflect differences in the participants’ positions on
the trajectories of the illness experience, or differences associated with the
experience of symptoms: for example, none of our participants at the time of
interview were beset by the unrelenting pain felt by Smith and Osborn’s
participants.
There is no doubt that contemporary Western society is struggling to respond
to the increasing prevalence of chronic health conditions such as CFS. There
remains an urgent need for health psychology to respond to this situation,
particularly in terms of generating an understanding of CFS (and other chronic
illnesses) both in the wider society and in those individuals who are affected by it.
Many researchers (Ogden, 2002) have argued that health psychology is still
limited in terms of its overarching framework, still tied too closely to a biomedical
model, and that it only pays lip service to the rhetoric of being a truly
biopsychosocial discipline. Arguably, much of the research associated with
traditional health psychology remains too closely aligned to a traditional
biomedical model and focuses on the aetiology of illness or on the pathology
and physical symptomatology of disease. Because there are no biological markers,
or biological treatments for CFS, it stands as a particular exemplar of what is
missing from a biomedical model of chronic illness. Because the biomedical
‘truth’ of the condition is absent, people with CFS, their carers (both informal
and formal) and service providers are left with an unmanageable psychosocial
reality of symptoms and experience. The palpable resistance to engage with this
non-biomedical reality (demonstrated through scepticism and rejection) speaks
volumes to the unwillingness of health professionals (but to a lesser extent people
with CFS themselves) to embrace any truly biospsychosocial model of illness.
At present, health psychology research also remains more concerned with acute
illness than with chronic illness and even when the focus is on chronic conditions,
the perspective sheds little light on the experience of the individual. Equally our
reliance on cross-sectional methodology does not foster an appreciation of
episodic and process focused experience. Further, extant research tends to
address issues of disease prevention and access to health services rather than
aspects of living with chronic illness. There remains a need for more longitudinal
 472 A. Dickson et al.

(qualitative) research to fully understand the processes underlying adaptation to

illness. These are all issues that future health psychology research should address.
We conclude with a consideration of the limitations of the present study. First,
the accounts were retrospective in nature, and as such, the salience of particular
events may have been skewed by memory. Second, half of the participants were
recruited via an alternative therapy clinic. It is possible, therefore, that they may
have been more assertive in dealing with their losses than other CFS sufferers.
The fact that many of the research participants were actively seeking treatment
and intervention may also indicate that they were not all at the same ‘stage’ of
their illness experience. Third, some participants became tearful during the
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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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