Psychology and Health May 2008; 23(4): 459476

That was my old life; its almost like a past-life now: Identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome
ADELE DICKSON1, CHRISTINA KNUSSEN2 & PAUL FLOWERS2
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.
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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 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 0.30.6% of the population (Campion et al., 1998) and CFS is most commonly found in females between the ages of 2040 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 sbring & Na rva nen, 2003; Deary, 2005; Shlaes, Jason, & Ferrari, actually exists (A 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). Dearys argument might also explain the sbring & Na rva nen, 2002; stigma that is often associated with CFS (A 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 sbring, 2001). When illness is active lifestyle to one that is, of necessity, passive (A 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 individuals identity (Corbin, 2003). This biographical change can result in a critical situation (Giddens, 1979) and the disruption of a desired life (Bury, 1982). sbring (2001), with regard to CFS, claims that biographical disruption A generates the transformation of identity into otherness: the individual sbring also experiences life outside the normal self and their normal world. A 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 sbring, 2001; Hyland, Sodergren, & Lewith, 2006). Some positive change (A individuals, for example, have been found to accept their post-illness identities by

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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 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 sbring, 2001; A sbring & Na rva nen, 2002; Clarke & James, 2003; Clements, (A 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 sbring & Na rva nen, 2002; Clarke & James, 2003; Raine et al., 2004). CFS) (A 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, IPAs 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. Method Fourteen individuals with CFS were recruited from an alternative therapy clinic (n 7) or through personal contacts (n 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 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 socioeconomic 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 2); in the participants own homes (n 9); at their place of work (n 2) or in the researchers home (n 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

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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 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 individuals 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. Annes 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 Annes 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. 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. Im useless to everyone. Im 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 its like being a bird but not being able to fly. You can see all the other birds doing it and you think Why cant I do that? Ive got the wings but I cant do it em, and thats what it comes down to, youre sitting there, youve got your hands, youve got your mind, youve got your eyes, you can see all these things that you could probably so, like theres a crossword over there, I could finish that, but its just not possible. You cant do it. Its 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 thats how I felt. I felt like part of me had died. Id have given anything to have it back again. I just wanted to be me. The old me before I got ill [Sophia].

Sophias 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 Sophias 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 didnt 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.

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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 thats what it was, that in the past Ive been very tearful, very upset and kind of semi-depressed I suppose with this dark cloud where theres 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 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, its in absolute shreds, youve eh, you know, youre 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 youre going along . . . eh . . . and its in tatters. You cant 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 didnt 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 dont like my life? And theres nothing wrong with my life but because youre so low and youre not your self, these doubts creep in, you know? Who am I and am I turning into a malingerer? [Cynthia].

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 didnt want to go out because I didnt know how to behave. I didnt 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:
Its 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 & Lindstrm, 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. Cynthias 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 thats to do with people not taking it seriously. And then realistically, you dont want to talk to them because if your CFS is part of your life, part of your everyday life, its obviously going to come into your conversation but they hint that theyre not interested and they dont 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

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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 Im 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, theyre 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 Ive 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 its like [Emily].

This acknowledgement of the validity of scepticism serves to stress the authenticity of CFS. Moreover, Emilys 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:
Its 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 youre going to have good days and bad days and that people dont understand what you have but youve just got to get through it. Theres 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. thats the key because once youve accepted something, its 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:
Its 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 boys 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 Pamelas account, setting and achieving these small goals closed the gap between her current self and her anticipated and 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 cant get out of. So for your own mental wellbeing its 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, youre 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, whats 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, its almost like a past-life now. I dont think of myself as being like that anymore. Now my priorities just lie in being healthy and happy. If youre healthy and youre happy, then youre damn lucky. Its 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 sbring, 2001; Sprangers & Schwartz, 1999), in which feelings of self-worth are (A maintained during illness by adjusting ones values and by re-conceptualising ones 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

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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 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 sbring, 2001; Schweitzer, biographical disruption (Anderson & Ferrans, 1997; A Kelly, Foran, Terry, & Whiting, 1995; Tuck & Human, 1998; Ware, 1998); sbring & Na rva nen, 2003; Ax, Gregg, & Jones, scepticism and delegitimation (A 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 sbring, 2001). However, our analysis although anchored to, and in with CFS (A 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 sbring & Na rva nen, 2002; Berne, 1992; Cooper, theme in the CFS literature (A 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 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 sufferers 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 sbring, for the integration of CFS as part of a new self or identity (as found by A 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 sbring, 2001; Clements et al., 1997; Lovell, 1999; used qualitative methods (A 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.

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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 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 Osborns 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 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 researchers 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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