Psychology and Health

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Stigma and the delegitimation experience: An

interpretative phenomenological analysis of
people living with chronic fatigue syndrome

Adele Dickson , Christina Knussen & Paul Flowers

To cite this article: Adele Dickson , Christina Knussen & Paul Flowers (2007) Stigma and the
delegitimation experience: An interpretative phenomenological analysis of people living with chronic
fatigue syndrome, Psychology and Health, 22:7, 851-867, DOI: 10.1080/14768320600976224

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Published online: 31 Jul 2007.

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Psychology and Health
October 2007; 22(7): 851–867

Stigma and the delegitimation experience: An

interpretative phenomenological analysis of people
living with chronic fatigue syndrome

ADELE DICKSON1, CHRISTINA KNUSSEN2, &

PAUL FLOWERS2
1
Department of Psychology, University of Stirling, Stirling, FK9 4LA and 2Department
of Psychology, Glasgow Caledonian University, Cowcaddens Road, Glasgow, G4 OBA

(Received 3 August 2005; in final form 14 August 2006)

Abstract
Individual in-depth interviews with 14 people with chronic fatigue syndrome (CFS)
were conducted, focusing on the experience of living with CFS. The interviews were
transcribed verbatim and were analysed for recurrent themes using interpretative
phenomenological analysis (IPA). Here we present two inter-related themes:
‘‘Negotiating a diagnosis’’ and ‘‘Negotiating CFS with loved ones’’. Participants reported
delay, negotiation and debate over diagnosis: further, they perceived their GPs to be
sceptical, disrespectful and to be lacking in knowledge and interpersonal skills. However,
participants found delegitimising encounters with their partners more difficult to deal
with. Participants viewed such delegitimation as a form of personal rejection; they were
hurt by their loved ones’ reactions and subsequently pondered the price of love, respect
and friendship. The findings are discussed in relation to extant literature, and
recommendations for future research are suggested.
Keywords: Chronic fatigue syndrome (CFS), delegitimation, stigma, IPA

Introduction
Chronic fatigue syndrome (CFS) is a condition characterized by a relapsing
fatigue that is not the result of ongoing exertion and which is not substantially
relieved by rest (Fukuda et al., 1994). Such fatigue is often accompanied by a host
of fluctuating symptoms including impaired concentration and short-term
memory, muscle pain, multi-joint pain, headache and sore throat. These
symptoms have the potential to affect every aspect of the individuals’ lifestyle,

Correspondence: Adele Dickson, Department of Psychology, University of Stirling, Stirling,

FK9 4LA. E-mail: adele.dickson@stir.ac.uk

ISSN 0887-0446 print/ISSN 1476-8321 online ß 2007 Taylor & Francis

DOI: 10.1080/14768320600976224
852 A. Dickson et al.

including their career, leisure pursuits, social and personal activities and self-care
(Featherstone, 1998; Moore, 2000; Solomon, Nisenbaum, Reyes, Papanicolaou,
& Reeves, 2003). The prevalence of CFS is difficult to ascertain, largely as a result
of two factors. First, the condition in itself is difficult to diagnose, because of the
significant overlap between symptoms of CFS and those of other chronic
conditions (Kennedy, Abbot, Spence, Underwood, & Belch, 2004); and second,
clinicians vary in their use of diagnostic criteria. Despite this, recent estimates
suggest that 150,000 people in the UK suffer from the condition ( Jason et al.,
1997), or 0.3–2.6% of the UK population (Campion et al., 1998). The peak
incidence of CFS appears to fall in the age category of 20–40 years and the
condition seems to predominantly affect females (Pheby, 1999; Prins, van der
Meer, & Bleijenberg, 2006).
CFS is of interest to health psychologists for a number of reasons. First, CFS is
unlike many other chronic illnesses (e.g. HIV, cancer, diabetes) in that there is no
single diagnostic ‘‘marker’’. Second, it is of interest because of its chronic nature.
The average duration of the condition is estimated to be between 3 and 9 years
(Cairns & Hotopf, 2005) and while some people may recover after only a year,
a minority may remain unwell for 20–30 years (Ax, Gregg, & Jones, 1998). Third,
symptom experience varies both at the within-person and the between-person
level. As a result of these factors, people who may have CFS often fail to receive
a medical diagnosis. Indeed, it has been estimated that one-third of the people
with CFS do not receive a diagnosis for 18 months or more following the onset
of symptoms (Dawes, 1991).
In part, the delay in receiving a diagnosis, or indeed the absence of a diagnosis,
may be due to the lack of a clear biological marker for the condition (Cho,
Skowera, Cleare, & Wessely, 2006). Prins et al. (2006) have shown that clinicians
encounter difficulties when trying to diagnose a person presenting with the
symptoms of CFS, and the authors attribute such difficulties to the fact that
people with CFS often present their symptoms in different ways: for example, one
person may highlight fatigue while another may highlight pain and discomfort.
Further, some clinicians may be irritated by their patients’ self-diagnosis of CFS,
particularly if the clinicians are themselves sceptical about the condition (Clarke
& James, 2003; Prins, Bleijenberg, Rouweler, van Weel, & van der Meer, 2000).
Finally, Prins et al. (2006) suggest that some individuals rely too heavily on
somatic attributions of the cause of their symptoms, a point also made by
Chaudhuri and Behan (2004): in other words, these authors have suggested that
the symptoms of CFS may to a greater or lesser extent result from psychosocial
factors. Other researchers (e.g. Åsbring & Narvanen, 2002, 2003) have suggested
that doctors tend to apply negative stereotype to persons with CFS, perceiving
them to be fixated on illness; in turn, this leads the doctors to question the
diagnosis (Åsbring & Narvanen, 2002, 2003). Either way, diversity among CFS
patients often challenges the skills of the clinician.
The extent of the problem is not to be underestimated. A survey of 68 patients
with CFS in the UK by Deale and Wessely (2001) highlighted that two-thirds
of the participants were dissatisfied with the quality of medical care that they
 Stigma and the delegitimation experience 853

received, and suggested that the participants required more effective commu-
nication with their GPs. Participants also believed that GPs required further
education in the diagnosis and management of the condition (Deale & Wessely,
2001). There is no doubt that consultation outcomes are poorer when there
are disputes between the patient and the clinician (Barry, Bradley, Britten,
Stevenson, & Barber, 2000). When clinicians are unable to provide a satisfactory
diagnosis, or when they are influenced by problematic consultations with their
patients, problems in management are likely to arise, the result of which may be
alienation between the clinician and their patient (Raine, Carter, Sensky, &
Black, 2004).
Experiences of delegitimation are, therefore, common in CFS (Åsbring &
Narvanen, 2002, 2003; Ax, Gregg, & Jones, 1997; Broom & Woodward, 1996;
Clarke, 2000; Clarke & James, 2003; Cooper, 1997; Deale & Wessely, 2001;
Prins et al., 2000). For the purposes of this article, delegitimation is defined as the
experience of having one’s definitions or perceptions of a condition disconfirmed
(Kleinman, 1992). Specifically, two distinct forms of delegitimising experiences
have been described: the first is with regard to other people’s construction of the
symptoms of CFS; and the second relates to health professionals’ perceptions of
the cause of the condition. Each is considered in turn.
Many of the symptoms experienced by people with CFS can often be dismissed
as being a consequence of modern living. For example, fatigue can sometimes be
perceived as a consequence of working long hours and juggling the responsibilities
associated with everyday living (Ax, Gregg, & Jones, 2001). Other symptoms,
such as sore throat, muscle pain and headaches, may appear trivial to other
people. This latter perception may be more damaging since it creates the illusion
that the person with CFS is not seriously ill (Ware, 1992).
The second aspect of delegitimation faced by people with CFS results from the
attributions made by health professionals as to the cause of symptoms ( Jason,
Taylor, Plioplys, Stepanek, & Shlaes, 2002). Richman, Jason, Taylor and Hahn
(2002) propose that Western medicine’s failure to find a viral aetiology for CFS
has promoted a paradigmatic shift in research perspectives: it is possible that this
shift underlies the tendency of health professionals to focus on socio-cultural
and psychiatric explanations of CFS (Chaudhuri & Behan, 2004; Cooper, 1997;
Ware, 1992). Such psychosocial, and indeed functional, explanations portray
CFS as psychogenic in nature, and have fuelled the perception that people
with CFS experience symptoms to escape responsibilities and burdening roles
(See Parson’s (1951) description of the ‘‘sick role’’).
It is in this context that this article explores the delegitimising experience of living
with CFS. Since there is no known or accepted aetiological agent of CFS and no
diagnostic test to identify who has or does not have CFS, the gap left by medicine’s
inability to construct the condition has been filled by a wealth of social
constructions. For example, the hole left by a lack of a palpable biomedical
‘‘truth’’ regarding CFS means that the very nature of the condition is questioned.
As Ware (1992) claimed, people with CFS are not seen to be ill but as
‘‘malingerers’’ and their symptoms are perceived to be ‘‘all in the mind’’. As this
854 A. Dickson et al.

article will illustrate, the absence of viable legitimation through diagnosis

and the confirmation of a genuine condition often results in uncertainty, doubt
and distress in those who have the condition. While there has been substantive
research highlighting delegitimising encounters with the medical profession
(Åsbring & Narvanen, 2002, 2003; Ax et al., 1997; Broom & Woodward, 1996;
Clarke, 2000; Clarke & James, 2003; Cooper, 1997; Deale & Wessely, 2001; Prins
et al., 2000), there has been a paucity of research focusing on similar experiences
with friends and loved ones. This article thus focuses on the way in which
people with CFS experience stigma and delegitimation through their interactions
with a broad range of key individuals, namely their GPs, friends and partners.

Method
Sampling
A total of 14 individuals with CFS were recruited from either an alternative
therapy clinic (n ¼ 7) or through personal contacts (n ¼ 7). The first author
approached a local alternative therapy clinic (Reiki), informed the therapist of the
nature of her research and asked if he would be willing to help with the
recruitment of participants. A list of seven names was generated. Upon contacting
the participants by telephone, there were no refusals. The researcher sought
participants from the alternative therapy clinic because she was aware that this
was a viable site from which to recruit people with CFS. The remaining seven
participants had been informed of the research through friends and colleagues
of the first author. All seven participants contacted the researcher and expressed
their willingness to participate.
The inclusion criteria were that participants should be adults between the age
of 18 and 75 years who had been medically diagnosed by their GPs or consultants
as having CFS. All participants completed the Centers for Disease Control
(CDC) (1994) diagnostic criteria (see Fukuda et al., 1994) in the form of a
questionnaire prior to the interview. All participants fulfilled these diagnostic
criteria. Participants were aged between 21 and 68 years; there were eight females
and six males. Participants were from various geographical locations in Scotland
and varied in socio-economic status. The interviews were conducted by the first
author (a white female academic researcher) in a range of settings (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)), depending on which
location was most convenient for the participant. The interviews lasted between
30 and 90 min. No financial recompense was offered for participation.
The focus of enquiry in the present research was the participants’ prioritizations
and understandings of CFS. It is noteworthy that each individual may have held
multiple or contradictory understandings of particular issues, and it was therefore
aimed to recruit a diverse set of participants who held a range of views. In this
way, the sample was not strictly representative. Rather, the aim was to generate
a purposive sample that represented this particular group of CFS sufferers’
 Stigma and the delegitimation experience 855

experiences, as opposed to representing the experiences of all CFS sufferers

in general.

Procedure and interview

Ethical approval for the study was obtained from the host institution.
As mentioned earlier, all participants completed the CDC (1991) diagnostic
criteria for CFS in the form of a questionnaire prior to the interview (see Fukuda
et al., 1994). An interview schedule was prepared to provide a heuristic
framework for the interview. The interview schedule began with the least focused,
or the least sensitive material, for example, questions such as ‘‘Tell me about your
experience of having CFS’’ or ‘‘How did you come to be diagnosed with CFS’’.
This approach was taken to establish trust and rapport. Once this trust and
rapport had been established, the interviewer asked more sensitive and focused
questions such as ‘‘How did other people respond to your illness?’’, ‘‘How did
that make you feel?’’
It is important to note that an inductive approach was adopted, and the
interview schedule was not followed in any strict or rigid way. In this way, the
content of each interview followed the participant through their accounts of their
CFS. The inductive interview style adopted a process of reflecting and probing
(e.g. ‘‘You said there that . . . . Can you elaborate on that for me?’’/’’Tell me more
about that’’). The interviewer often requested more detailed information to
determine a richer, more insightful sense of how the participant thought about
their condition. All interviews were recorded on a mini disk player and were
subsequently transcribed verbatim.

Analysis
Transcripts were analysed by the first author for recurrent themes using
interpretative phenomenological Analysis (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, insightful or articulate expressions of any given theme. In addition, the
remaining authors provided credibility checks by assessing the principal analyst’s
coding through analysing interview transcripts. IPA has been used extensively in
health psychology (for a review, see Brocki & Wearden, 2006). For more detail on
IPA, refer to Smith (1996) and Smith and Osborn (2003).
IPA was adopted because its phenomenological focus primarily addresses a
hermeneutic of empathy; it seeks to explore the links between what people say
856 A. Dickson et al.

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, not the discourse
or narrative, is the unit of analysis. Their meanings and understandings, as they
relate to their actual experiences, present a rationale for research.
This article highlights two recurrent themes, both inter-related and concerning
aspects of the delegitimation experience: ‘‘Negotiating a diagnosis’’ and
‘‘Negotiating CFS with loved ones’’.

Results
Negotiating a diagnosis of CFS
Overall, 10 of the 14 participants experienced delay or difficulty in achieving
a diagnosis of CFS, while all of the participants encountered very specific and
delegitimising experiences with their GPs. The most frequently reported
experiences included: a diagnosis of depression as opposed to CFS; a diagnosis
of another condition, such as pre-menstrual tension or the menopause; hostility;
being informed that CFS did not exist; and a trivialization of their symptom
experience. Many participants experienced a constellation of these reactions and,
in response, reported heated negotiations with their GPs with regard to receiving
a diagnosis of CFS.
There is no doubt that the most frequently reported experience with the GP
was a contested diagnosis between CFS and depression. The participants
reported a sense of being ‘‘in tune’’ with their own bodies, and having a strong
sense of insight into their own health. This allowed them the knowledge that they
were definitely not suffering from depression or indeed any other medical
condition but were suffering from CFS. The participants often had a strong sense
of the truth of their own self-diagnosis with CFS. This personal understanding
of their condition fuelled negotiations with the GP. Thomas presents a typical
account of such contested diagnoses:
‘‘He [GP] goes ‘‘Oh, it sounds like you’ve got depression’’, he says ‘‘these are the symptoms of
depression’’, I said ‘‘No they’re not’’, I said ‘‘some of the symptoms of depression yeah, I’m not
sleeping!’’ And all these kinda but I said ‘‘It’s not depression, I know my own body and I know
how I’m feeling and I know this is not depression’’. He goes ‘‘Well, depression can manifest
itself in different ways’’ and he goes, and he kind of irritated me because what he said was ‘‘Oh,
eh, the, kind of, the medical world is just a cop out what they call things like this CFS’’ and eh,
what was it? ‘‘and irritable bowel’’ he said ‘‘It’s just a cop out on their part, basically it’s just an
excuse cause they can’t accept it’’ he said ‘‘realistically all these things are just depression’’ ’’
[Thomas].
Thomas’s frustration with his GP’s display of ignorance is clear in the above
extract. Many participants, like Thomas, perceived such negotiations as a
personal attack on their sense of morality, as though they were being accused
of searching for an escape from their personal responsibilities and roles.
Consequently, the mutual trust, respect and communication associated with
good doctor–patient relationships eroded.
 Stigma and the delegitimation experience 857

For eight participants, the GP’s diagnosis of depression went one step further:
the prescription of anti-depressants. Despite confrontation and negotiation with
their GPs, participants were informed that their symptoms were simply the
manifestation of depression and that a course of anti-depressants would alleviate
their symptom experience. Perhaps, the most extreme example of this was
provided by Rosemary:
‘‘I was actually offered anti-depressants at the time, and was told that if I didn’t take them,
I would be struck off [laughs] the doctor’s . . . . basically, the doctor’s thingy, because I had been
asking them for them to give me, what was it? How they put it? I was looking for something
out a black magic box and there wasn’t anything there! So, I was told that if I didn’t take the
anti-depressants, I would basically be struck off the doctor’s list, because there was nothing
they could do for me. So I took them for two months and then I kidded on I was taking them
for six months [laughs] but I wasn’t, and I binned them because they didn’t do me any good’’
[Rosemary].
Rosemary’s surprise and disbelief at her GP’s reaction is evident. The
threats, scepticism and disbelief shown by GPs resulted in deception on the
participants’ behalf. Indeed, five of the eight participants who were prescribed
anti-depressants engaged in deceptive measures – they ‘‘kidded on’’ that they
were adhering to their GP’s instructions as a means of legitimizing their
condition. The rationale was that if participants could ‘‘prove’’ that the anti-
depressants were not effective in alleviating their CFS, then perhaps, their
condition would be both recognized and legitimized by their GPs. This did not
occur for any participants, and the GPs continued to prescribe anti-depressants
for prolonged periods of time.
Feelings of anger, frustration and even hatred towards the medical profession
as a whole were common reactions to these difficult clinical encounters. These
feelings stemmed from surprise and disappointment with the GP’s reaction rather
than their specific conduct. Therapeutic expectations of doctor–patient relation-
ships were often shattered. When asked how she felt when encountering such
delegitimation, one participant responded:
‘‘Well, a bit stupid really. And I suppose a bit annoyed that she [GP] would treat any of her
patients like that. Doctors are supposed to be understanding, open-minded, sympathetic and a
store of knowledge. They’re the ones that are supposed to be aware of slightly less common
illnesses, not the patient. I think that’s when I really lost my faith in the medical profession.
I just didn’t have confidence in them anymore. They shouldn’t make fun of their patients and
that’s how I felt, like she was making fun of me. It really angered me. It was like she was saying
‘‘Oh, you’re just a hypochondriac, you’re making all this up, you’re not really ill, it’s just an
excuse for failing in life’’ really. And it angered me because I was genuinely ill. I needed her
support, her advice, for her to treat me properly. If someone went to the doctor and they had
cancer they wouldn’t laugh at them and send them away and tell them that they were making
it all up. No, they’d refer them for tests and treat them. Rightly so’’ [Angie].

The preceding extract encapsulates the frustration and disappointment that

the participants experienced. Once more, the GPs’ cynicism with regard to the
authenticity of the participants’ symptom experience was consequently recipro-
cated. A shift in the power dynamics between the participants and the GPs
appeared: the participants were now presenting a superior knowledge of CFS to
that evidenced by GPs. Following these encounters, the GP no longer warranted
858 A. Dickson et al.

their expert status with regard to health. In response, many participants

transferred GPs as a means of pursuing the care, validation and support that
they felt they deserved. While six of the participants received such care, the
remainder were confronted by further experiences of delegitimation and similar
processes of negotiation began. For those who did receive recognition of their
condition, reassurance and comfort that their illness was a real, genuine and
physical condition was reported. However, across the participants an apparent
lottery of recognition was clear:
‘‘I mean I was fortunate. I have to say, my GP was great. I think if I had another GP I wouldn’t
have been so lucky and I don’t think I would have got the medical support as much. I think I’d
just have been fobbed off with some iron tablets and ‘‘there you go, you’ll be alright in a couple
of months or so’’ ’’ [Sophia].

There is no doubt that delegitimation in the medical profession prevented,

or at least delayed, the diagnosis of CFS and prolonged a period of considerable
distress. The delay in receiving a diagnosis had consequences for interactions in
the wider community. When asked why diagnosis was important, one participant
claimed:
‘‘Eh, it promotes a feeling of being at ease with being ill. Because there’s a great ill at ease with
being ill . . . . How does that make me feel? That I’m not kidding people on . . . and that I’m not
complaining about something trivial. It’s almost as simple as that’’ [ John].

Diagnosis, therefore, appears to give credence and legitimacy to the illness

experience. Participants felt reassured that they were suffering from a genuine
condition and they gained confidence to stand up to delegitimation in the wider
community as a result.

Negotiating CFS with loved ones

The analysis showed that delegitimation occurred in many contexts beyond the
clinical encounter. It flavoured the whole experience of living with CFS both
within interactions with other people and within internal dialogue for the
participants themselves. Of the participants, 10 attributed non-clinical delegiti-
mation to a lack of awareness of CFS and to the ongoing and ‘‘invisible’’ nature
of the condition. Whilst living with CFS most participants reported a loss of
friendships, as expectations of reciprocity failed to be met:
‘‘Well, it’s just that a relationship is supposed to be a two-way thing where both parties put an
equal amount of time and effort in and both parties reap the same amount of rewards. But
when you have this illness, you don’t have the same energy to do half the things you did before
so your friends get fed up waiting on you getting better and they get fed up running behind you
and eventually, you speak to them less and less and they get on with their lives and they just
fade away. Out of sight out of mind basically’’ [Cynthia].
A clear sense of both loss and regret is expressed in the above extract. Many
of the participants reported feeling both isolated and lonely as a result of CFS.
Although the loss of these key relationships is important in terms of diminishing
levels of support, the participants articulated slightly different concerns echoing
their previous feelings about clinical encounters with GPs. Once more the
 Stigma and the delegitimation experience 859

disappointment, failed expectations and changes in roles are important in

understanding the impact of delegitimation. The participants described how,
over time, friends’ patience wore thin and both frustration and cynicism
increased:
‘‘You get to the stage where people are so fed up with . . . you know someone who can’t
function normally, and they get to the stage where they think ‘‘Oh, they’re at it, they’re just
making a meal of this’’ or whatever. You know, there is that sort of intolerance around’’
[Stuart].
Once more we see how the participants perceive functional, sceptical and
accusatory understandings of their condition and their conduct. Kelly expresses
her concerns of the imagined double standards she thinks she presents to anyone
else observing her behaviour. With no recognizable injury or disability she
defends her desire to sunbathe:
‘‘ Eh, so people would see you lying out on the green on a sunny day and they would say ‘‘Look
at that! She canny go to work or do her shopping or come for a night out but eh . . . she’s out
there sunning herself’’. Eh . . . and I mean they just don’t seem to realise that you can lie
and rest in the sun for an hour just the same as lying in your bed in the house. But I like the
fresh air. So they’ve got that kind of an . . . eh . . . attitude. They only see what they want to
see’’ [Kelly].
Delegitimising encounters with the participants’ partners were the most
difficult for participants to accept. Eleven participants interpreted such
encounters with their partners as representing a lack of trust: the partner did
not genuinely believe that they were ill with CFS. This was also perceived to be a
form of rejection, and in consequence, almost all participants experienced a loss
of confidence in defending their illness to others:
‘‘If he [husband] doesn’t believe me and he can see how ill I am, why would other people
believe me?’’ [Anne].

Nine participants claimed that this delegitimation from partners was associated
with the fact that CFS was not perceived to be a ‘‘certified illness’’. Indeed, the
inconsistency of their CFS symptomatology seemed to fuel this delegitimation.
For example, the inability to plan for outings as a result of uncertainty (and the
inability to predict degree of wellness on that proposed day) frustrated the
partners and raised scepticism of the very nature of CFS. In this context, CFS was
interpreted as a functional excuse to escape undesired activities. John summarized
the nature of his partner’s lack of acceptance of his condition:
‘‘I was under pressure em . . . to either be well or not well, to either be at work and well, or
to be off and unwell. And it doesn’t quite work like that, when you’ve got this kind of illness’’
[ John].
The inconsistent nature of CFS appeared to make it more difficult for John’s
partner to accept his condition and thus exacerbated scepticism of it. Linked to
the inconsistency of symptoms, participants often reported pacing themselves and
conserving their energy on days when they felt well, and this was both frustrating
and difficult for their partners to accept, particularly when they ‘‘looked’’ well and
appeared to be capable of their suggested activities.
860 A. Dickson et al.

Like many participants in the present research, John described how he would
have liked to have been treated when ill, by referring to how he would have
treated his partner had the situation been reversed:
‘‘Was it the other way round, I would have hoped to . . . somebody to have said to me ‘‘Aye,
right, I don’t understand it either, it’s all a mystery to me but I can see that you’re not
well . . . em . . . but whatever you tell me, I accept’’. . . because I always said that ‘‘If you told me
that you were not well, I’d accept it without too much of a question, if you say you’re not well,
that’s fine. That’s good enough for me and I will support you physically and emotionally, I will
support you financially, physically, emotionally, whatever you need, I will do it.’’ And I didn’t
get that’’ [ John].
There is a profound sense of disappointment and rejection in the aforesaid
account. This is specifically with regard to John’s expectation of unconditional
love and support not being met by his partner. In the face of this rejection, John
and several other participants reported a ‘‘struggle’’ to cope with their illness.
They also reported that understanding and support from their partners would
have been both comforting and reassuring in providing the sense that they were
not alone in their illness, and many suggested that such support and acceptance
would have raised their own quality of life as well as facilitating their coping.
There also appeared to be a great need for, and expectance of, a shared truth, a
reciprocal acceptance and support between the participant and the partner. When
this was not met, participants’ accounts were tinged with anger, resentment and
bitterness. Indeed, it was perhaps the perceived imbalance in their relationship
that most hurt participants, the idea that their trust and support for their partner
was not reciprocated when they most needed it to be.
Perhaps not surprisingly, participants reported feelings of isolation and
loneliness. Isolation was the consequence of a breakdown in communication
between participants and both their friends and partners, and the feeling of being
rejected by them. This isolation was reported to be both beyond the participants’
control and to be overwhelming:
‘‘You can’t make people believe you, you can’t make them understand and you can’t make
them want to. So you just have to accept that you’re on your own to some extent’’ [Angie].

As in the above account, many participants felt that they were dealing with their
illness single-handedly. Participants felt both saddened and disillusioned by the
harsh reality of their situation. There also appeared to be a lack of control over
their situation – other people control the degree of trust and support that they will
provide to the participant. This again highlights the fundamental role of support
and empathy for the wellbeing of people with CFS.

Discussion
In this article, we have presented the delegitimising experiences of people with
CFS in relation to both the medical profession and friends and partners. The
research adds to the growing body of literature on delegitimation and CFS in
two ways: first, it is novel in its focus on such experiences in relation to friends,
 Stigma and the delegitimation experience 861

partners and loved ones; and second, it is original in its use of IPA to explore these
experiences.
With respect to the medical profession, participants focused on their battle for
diagnosis, a battle that was sometimes futile and always arduous. Participants
reported delay, negotiation and debate over diagnosis, and most perceived their
GPs to be sceptical and lacking in knowledge: in fact, a shift in the power
dynamics was noted, where participants themselves became the ‘‘experts’’ with
regard to CFS. Further, participants were disappointed, shocked or upset by the
scepticism, lack of respect and poor interpersonal skills they noted in their GPs.
This led to a loss of trust in the medical profession. Similar findings have been
reported by other authors (Ax et al., 1997; Broom & Woodward, 1996; Clarke,
2000; Clarke & James, 2003; Cooper, 1997; Deale & Wessely, 2001; Prins et al.,
2000, 2006). What tends to emerge is a desire for courtesy and respect from the
GP and an urgency for the recognition of CFS as a genuine condition.
From the participants’ perspectives, many GPs appeared to hold stereotypical
views of patients presenting with the symptoms of CFS, and to believe either that
the symptoms were of psychological origin or indicative of affective disorder
(Chaudhuri & Behan, 2004; Clarke, 2000; Cooper, 1997; Prins et al., 2006;
Ridsdale, Evans, & Jerrett, 1994). These findings reflect those reported by
Åsbring and Narvanen (2003) – that physicians tend to characterize people with
CFS as being excessively fixated on their illness, and that they question the
credibility of these patients as a result. Deale and Wessely (2001), however,
proposed that a psychiatric diagnosis may represent an aetiologically neutral
observation that is misinterpreted by patients. Either way, the participants of the
current study tended to resist explanations or diagnoses that centred on
depression or psychosomatic disorder. In part, this resistance may reflect a
confusion or misunderstanding of attribution (Scherman, 1998): accepting
responsibility for symptoms may be seen as synonymous with accepting blame,
and accepting responsibility for recovery may be confused with accepting
responsibility for the cause. However, while some GPs may have been trying,
legitimately, to address the symptoms of depression that can accompany any
chronic condition, particularly when they were unable to provide a ‘‘cure’’ for the
physical symptoms of CFS, other GPs appeared to the participants to believe that
CFS was ‘‘all in the mind’’. It is likely that the participants who were faced with
the latter had an agenda to prove the authenticity of their condition. This may
have had detrimental consequences for the recovery of these participants (Hadler,
1996). Perhaps the key point to make here is that GPs need to employ
interpersonal and communication skills: they need to listen to, acknowledge
and respect the accounts provided by their patients; they need to consider the
possible explanations for the symptoms, without discounting a diagnosis of CFS;
and they need to consider with tact the role of psychological factors in the
experience of CFS symptoms. If the GP suspects that depression or another
affective disorder is exacerbating the problem, this needs to be carefully
negotiated with the patient. It is important for the wellbeing of the person with
CFS that the psychosocial or psychosomatic explanation is not presented by the
862 A. Dickson et al.

GP as an alternative explanation for symptoms (Chaudhuri & Behan, 2004; Prins

et al., 2006; Sharpe, 1998).
There is some evidence to suggest that the symptoms of CFS are more likely to
be attributed to psychosocial causes by physicians when the person presenting
with those symptoms is female (Åsbring & Narvanen, 2003). However, this did
not appear to be the case for the participants in the current study: both male and
female participants reported instances where the GP had made such an
attribution. In this, our results are more similar to those reported by Deale
and Wessely (2001): this may reflect the fact that male participants were
well-represented in both our own study and that conducted by Deale and Wessely
(2001).
In line with the findings of other authors in this area (Broom & Woodward,
1996; Cooper, 1997; Dawes, 1991; Featherstone, 1998; Prins et al., 2006), we
found that many participants had experienced delay in achieving a diagnosis of
CFS. Such delays are of course difficult for people with CFS to deal with, and
they can contribute to the experience of delegitimation in a number of ways.
Without a clear diagnosis, the individual with CFS may find it difficult to take
legitimate time off from work, leading to a worsening of their symptoms.
At another level, without a diagnosis, the individual does not have the ‘‘right’’
to temporary release from other responsibilities or obligations (Parsons, 1951),
and they then find themselves in a state of anomie. At this point, the
delegitimation experience may become more widespread.
Overall, it is likely that the lack of a single biological or physical ‘‘marker’’ for
CFS fuels delegitimation. In this, CFS has much in common with other chronic
and difficult to diagnose conditions, such as chronic pain, fibromyalgia and the
other unexplained disabilities (Åsbring & Narvanen, 2002; Davison, Sharpe,
Wade, & Bass, 1999; Henriksson, 1995; Kouyanou, Pither, Rabe-Hesketh, &
Wessely, 1998). Indeed, research has shown that delegitimising experiences are
less common in those individuals who have a sound physical aetiology for their
condition (Kouyanou et al., 1998).
We now turn to the experiences relating to friends and partners. To our
knowledge, the present study is the first qualitative study to focus on this source
of delegitimation although Åsbring and Narvanen (2002) explored this issue in
relation to formal caregivers of people with CFS. While the medical problem
centred on the lack of a biological marker, the problem with friends and partners
centred on two related factors: the invisibility of the symptoms, in that the person
did not appear to be ill; and the inconsistency or variability of symptoms, in that
the person appeared ‘‘better’’ on some days than on others. These findings reflect
those reported in the literature relating to the stigma of CFS (Åsbring &
Narvanen, 2002; Deale & Wessely, 2001; Green, Romei, & Natelson, 1999;
Ware, 1992), which has highlighted that people with CFS are subject to
accusations of lying about or exaggerating their condition as a means to escape
mundane responsibilities. Having a shadow cast over their moral characters
can then result in apprehension about disclosing their condition to others
and often secrecy. Again, this literature has highlighted that such attitudes
 Stigma and the delegitimation experience 863

are related to the symptomatology of CFS where these symptoms are often
considered to be simply consequences of modern living. This then leads to the
trivialization of the symptom experience and delegitimation.
The point at which the medical and social delegitimations met was in the delay
over diagnosis, in that, for partners in particular, there were weeks or months of
unexplained behaviour, behaviour that directly affected the lives of others.
Certainly, participants found delegitimation from their partners the most difficult
to deal with, and it was interpreted as rejection. The questioning of the reality
of symptoms, by friends and partners, was interpreted by participants as a
questioning of their integrity and honesty: participants felt that they were being
accused of faking or exaggerating their symptoms to escape from their
responsibilities. Inevitably, participants felt rejected by those close to them, and
had to revaluate friendship, trust and love. They felt let down by those closest to
them at a time when they most needed support. This often led to feelings of
isolation.
The findings are consistent with those found by other authors, using
quantitative methods (Åsbring & Narvanen, 2002; Ax et al., 1997; Cooper,
1997; Ware, 1992). These data have largely been generated from the care
receiver’s perspective and have highlighted that stigma is most commonly
experienced through other people’s questioning of the morality, veracity and
accuracy of the symptom experience. The psychologizing of the symptom
experience is also commonly reported in this literature.
The symptoms of CFS, and the variability of their impact upon a day to day
behaviour, are difficult to understand, and some participants acknowledged that
they understood the basis of the misattributions made by friends and colleagues.
However, these misattributions were harder to deal with, and forgive, when they
were made by partners. Coping with any chronic health problem can be difficult
at times, particularly if family members are unable to provide practical and
emotional support (Anderson & Ferrans, 1997; Foxall, Eckberg, & Griffith, 1986;
Heckman, 2003; Schmitz & Crystal, 2000). When partners doubt the veracity of
the expression of symptoms, the person with CFS is doubly handicapped
(Heijmans, de Ridder, & Bensing, 1999). The source of such delegitimation lies
within our Western culture, where, there seems to be an implicit dichotomous
understanding of ‘‘health’’ versus ‘‘illness’’. Or as a participant ( John) said, there
is a pressure to be either well or not well – and if we are not well, we need a
medical label to support our behaviour. There is no simple way to address such
problems. Information is key – it is imperative that we publicize the condition in
a way that acknowledges the impact that CFS can have. It is also imperative that
we make advice available to the family of people with CFS, with regard to what
they can expect from the sufferer both in terms of their symptom experience and
illness behaviour. Advice and information in workplaces and within medical
centres will also contribute towards a better appreciation of the very nature of the
condition and in turn, help to authenticate the CFS sufferer’s illness experience.
Moreover, promoting more general understandings of episodic and unpredictable
chronic illness has great relevance to many other health conditions.
864 A. Dickson et al.

It is clear, therefore, that the combination of delegitimising encounters with

the GP and with friends and partners is as great a burden for the CFS
sufferer as the illness itself. The futile battle for diagnosis is exhausting for
people who live with the condition as is the constant struggle to validate their
symptom experience with friends and partners. Disappointment in their GPs’
lack of knowledge and poor interpersonal skills, and in their friends’ and
partners’ lack of trust, resulted in the participants feeling very isolated and
alone.
In contrast with the extant literature, the current study adopted an IPA
approach to understanding delegitimising experiences related to CFS. A number
of authors have adopted a quantitative, questionnaire-based methodology (e.g. Ax
et al., 1997; Deale & Wessely, 2001; Jason et al., 1997; van Houdenhove et al.,
2002). Other studies have employed qualitative methodologies including
Grounded Theory (Åsbring & Narvanen, 2002, 2003; Raine et al., 2004);
Discourse Analysis (Clarke & James, 2003); and Case Comparison Method
(Clarke, 2000; Clarke & James, 2003). The use of IPA in this study elicited rich,
insightful accounts as prioritized by the participants themselves, and this may
account for the emphasis placed by participants on delegitimising encounters
with friends and partners, as opposed to focusing solely on their experiences
with GPs.
We conclude with a consideration of the limitations of the present study.
First, the participants met self-reported criteria for CFS as opposed to a definite
clinical diagnosis and their accounts were retrospective in nature. As such, like the
vast majority of both quantitative and qualitative research, the salience of
particular events may, therefore, have been skewed by memory. Second, half of
the participants were recruited via an alternative therapy clinic. It is likely,
therefore, that these participants were to a greater or lesser extent biased against
more conventional biomedicine. They may also have been more assertive in
seeking out and accessing support to address their symptoms. Third, some
participants became tearful or upset during the interview, particularly when they
were talking about loss, or delegitimation by their partner. When this happened,
the participants were encouraged to suspend the interview and the interviewer
did not continue with that line of questioning. In this way, a full exploration
of emotions, and emotive experiences, may have been limited. Finally, this
article only represents the participants’ perceptions of their experiences – the
findings are specific to this particular group of people with CFS and cannot be
generalized to the wider CFS population. The results are, therefore, suggestive
rather than conclusive. Further research exploring the delegitimising experiences
of people with CFS (particularly in the context of friends and partners) is
suggested.

Acknowledgments
The authors thank all the participants for their time and cooperation.
 Stigma and the delegitimation experience 865

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