Living with chronic fatigue syndrome

Chronic fatigue syndrome (CFS) can sometimes lead to an identity crisis so severe it is akin to dying. That’s one message derived from comments made by fourteen people with the condition who were interviewed in-depth by health psychologists in Scotland.

CFS, also known as ME (myalgic encephalomyelitis), is a poorly understood condition characterised by long-term tiredness that persists even after sleep and rest. The organic cause is unknown.

Using a qualitative technique called interpretative phenomenological analysis (pdf), Adele Dickson and colleagues identified three themes in the accounts of what it is like to live with CFS: “Identity crisis: agency and embodiment”; “Scepticism and the self”; and “Acceptance, adjustment and coping.”

The people with CFS said that the condition has stripped them of their identities and left them feeling detached from their minds and bodies. “The frequent use of the language of bereavement is suggestive of processes of mourning and even perhaps the death of anticipated self,” the researchers said.

The lack of a medical explanation for CFS means the condition is often met with scepticism. The people with CFS said social interactions, rather than being supportive, often became a source of anxiety because of people’s scepticism and the pressure to behave as if one did not have CFS. The interviewees said they even began to doubt themselves. One woman said she had asked herself: “Who am I and am I turning into a malingerer?”

Fortunately, most of the people with CFS had started to accept the reality of their new lives and small, achievable tasks were said to boost morale.

Adele Dickson and her co-workers concluded that there was an urgent need for health psychology to respond to the increasing prevalence of chronic health conditions such as CFS in Western Society. Health psychology needs to truly embrace a biopsychosocial model of illness, they said, and to conduct longitudinal qualitative research “to fully understand the processes underlying adaptation to illness.”

Dickson, A., Knussen, C., Flowers, P. (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

Post written by Christian Jarrett (@psych_writer) for the BPS Research Digest.

5 thoughts on “Living with chronic fatigue syndrome”

  1. I studied Psychology to A level some years ago and I would just like to say a few thing about your article regarding CFS and Myagic Encehloyelitis.Firstly, you have only studied 14 people and 14 people is not usually regardsed as an acceptably good enough sample to make it representative of the whole CFS and ME population.You can only make sweeping generalisations of what the Chief Medical Officer has already described as a heterogeneous patient group.People use the term ME because historically it has a descrete description of symptoms that clearly define it.Chronic Fatigue Syndrome as a term is a vague condition and the descriptive definition can include people who primarily have mental health problems and not the specific symptoms relating to Myalgic Encephlomyelitis.This problem is the direct creation of the medical profession who invented Chronic Fatigue Syndrome as a “catch all” term over 20 years ago.Some call the invention of FS as the mother of all dustbin diagnoses.It is the medical profession who still disagree about the origins of ME that predate the wider definition of CFS.It is CFS that liason psychitry has being trying desperately to “own” since the start of the 1980’s. After all, it was liason psychiatry who played a big part in creating CFS whilst at hte same time declaring that “ME” did not exist. It is no wonder that patients feel the way they do when rightnow one GP accepts that their patient has a neurological disease defined by the World Health Organisation called ME whilst if that petient has to change GP they find their new doctor now believes that the same patient has a psychosocial disorder called Chronic Fatigue synonymous with Neurasthenia -treatable and indeed curable with CBT and Graded Exercise.I got diagnosed with post viral CFS (PVCFS)12 years ago and had to retired from my profession of radiography and yes I became detached from the person I used to be because I found myself house and bed bound and in constant pain with migraines, polyarthralgia and other symptoms.Prior to illness I was not the same person… I was fit and able with active hobbies and a busy working life and loads of friends.This feeling of detachmant is nothing special and can relate to any patient who becomes severely ill and who subsiquently is unable to be the person they were before they were ill.You are forced to change your life because you find you are unable to function and do the things you used to do.And you find your friends slowly become your former friends because they fail to understand and carry on in the fast lane of life whilst you end up on the hard shoulder or in a cul-de-sac.And because the medical profession hasn’t come to any meaningful agreement, and because there has been a denial of research into the underlying causes of CFS and ME allowing your author to keep on saying that the underlying cause is “unknown” it is no wonder that patients are left angry and confused and psychologically scarred.Four years ago I disovered by a simple change of GP that I had been medically misdiagnosed for 8 painful years of my life.Due to a 2nd opinion from a rheumatologist who ran out of ideas I ended up with a dustbin diagnosis of PVCFS.After 4 years of fighting, PVCFS is no longer an issue with my eventual rediagnosis.My polyarthralgia is now polyarthropathy and it has been agreed at consultant level that I do have some form of sero-negative arthritis after all and probably Behcet’s disease.But over this last 4 years I have found one doctor backing up the opinions of another who in turn is supporting the views of another who initially claimed that it was impossible to have Behcet’s disease for a couple of elementary reasons that I knew to be factually bogus or false.It is no wonder to me that patients end up with psychological problems because patients sometimes can end up in receipt of low level abuse from the dark side of the NHS – an NHS I never knew existed when I proudly worked for them 12 years ago.I now find myself appauled by the farce that passes for healthcare now that I am a chronically ill patient.Yours sincerely,Stephen.

  2. People are blown off their feet by a viral infection, don’t get up again, and ‘the root cause of the scepticism lies in our failure to see beyond a dualist ontology of CFS’.Good grief, what on earth has happened to Napier Technical College?

  3. I completely agree with Stephen on the matter. With any long term debilitating illness of course there will be feelings of isolation and a crisis of identity, but I don’t think this is a symptom solely related to ME. I also think there needs to be a much greater understanding of the condition among medical practitioners. I was diagnosed with PVCFS at the age of 12 after a long 3 months in and out of hospital. During this time my muscles began to grow so weak that I became wheelchair bound. On one hospital visit one of the doctors told me CFS not only didn’t exist but that I should be able to walk and tried to make me (resulting in my collapse). This experience was incredibly distressing and I knew that what I was experiencing wasn’t in my head. However, even if CFS was a purely psychological problem, should it really be given that little respect?Hopefully as we find more out about the condition sufferers won’t be treated in such an appauling manner and more help can be put in to helping these people back to recovery.Katrina

  4. ME/CFS is not poorly understood and the scientific research on the pathonogenisis is increasing all the time. Dr kerr has found gene abnormalities and seven subtypes within these. The Whittamore Peterson Institute has found that a Hepers virus was responsible for the Incline outbreak in the 80’s.The main problem is the constant banging on about it being ‘medically unexplained'(and thus worthy of some dogdy and patronising talk about ‘functional disorders and somatic symptoms etc – for which there is precisely NO reliable research at all) rather than actually testing people properly to find out what is actually wrong with them.Of course getting devestatingly unwell and, in my case, ending up bedridden in a dark room unable to lift a pillow, dizzy to the point where the room span, unable to sleep at all, migraine, all over pain – immense pain – yes of course this is a berevement – it is very upsetting – and then to have people saying they don’t believe you because they have not managed to work out what is causing it – yes! Of course that is distressing.Did you really have to do research to work out how that might feel – could you not have just used your imagination or read some novels?I hope you will find a way to add it or conatct me when your site is working properly.Joss Morton

  5. A few times I found myself saying “When I was alive…” instead of “When I was healthy…”

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