That Was My Old Life/Past Life

'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

Journal: Psychology & Health, Volume 23, Issue 4 May 2008 , pages 459-476

Authors: Adele Dickson [a];  Christina Knussen [b]; Paul Flowers [b]

Affiliations:
[a] Department of Psychology, Napier University, Edinburgh, UK
[b] Department of Psychology, Glasgow Caledonian University, Glasgow, UK


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.

* * *

Dyno responds:

 I had a problem with some of the statements in that
  article, specifically including that one.

  I think that it's important for "outsiders" (those without CFS) to understand the severity of the condition and its impact on the whole being -- that it can completely obliterate not just any quality of life, but also any sense of self. I don't believe that the suicide rate
  for CFS is just due to intolerable pain or fatigue. I suspect it's
  equally caused by that complete loss of self. But I think it's equally
  important for outsiders to understand this in the *physiological* not
  psychological context -- that this condition is so very real and so
  very severe it causes these extreme personal side effects, that this
  much more than a "gee, you're tired a lot" illness. In other words,
  using the deterioration of the self and quality of life to prove the
  existence and severity of the illness, not to prove a psychological
  cause of it.

  I mean, any serious condition will have psychological effects. A study
  examining the emotional toll of AIDS or cancer or loss of a limb would
  help validate the sufferers and possibly shed light on their situation
  to outsiders. Which could then help get those people the emotional and
  financial support needed. The same could be done for those with CFS if
  the study is done right. I think that article sort of steps in the
  necessary direction, then falls short.