‘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

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.

Keywords:

• Chronic Fatigue Syndrome
• interpretative phenomenological analysis
• loss of self
• identity crisis
• coping

Acknowledgements

We thank all of the participants for their time and co-operation and the reviewers and editor for their comments.