‘The letting go, the building up, [and] the gradual process of rebuilding’: Identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract

The aim of this study was to explore the phenomenon of identity change and subsequent post-traumatic growth (PTG) in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Ten participants (average illness duration 7.4 years) were interviewed (average length, 79 minutes) via a semi-structured interview schedule and verbatim transcriptions were analysed with interpretative phenomenological analysis. The four superordinate themes revealed were ‘comparisons of past to present self: “you have to be someone else, and you have to live with that’’’, ‘the effect of social isolation on identity and subsequent insights into others’ behaviours’, ‘contemplation of future and identity: ‘‘where do I go from here?”’, and ‘PTG: “the letting go, the building up, [and] the gradual process of rebuilding”’. These themes outlined the experiences of those with ME/CFS as they underwent changes in identity due to the limitations the condition imposed on activities and roles, understanding others’ behaviours after a period of isolation, the comparison of the past self with the present self and finally, the positive growth that was noted by two of the interviewees with regards to a new ‘true’ self. Despite the distressing and unpredictable nature of ME/CFS, it appears that individuals with this disorder can experience personal growth.

Keywords:

• myalgic encephalomyelitis/chronic fatigue syndrome
• interpretative phenomenological analysis
• identity change
• post-traumatic growth