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, 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."

Further reading

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