A life lived differently: an exploration of how living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) impacts upon people's identity

Existing literature provides an insight into CFS/ME, but it is fractured, in that it does little to serve understanding, empathy or coping. Moreover the experiences of people with CFS/ME are under theorised. The literature demonstrates that issues of identity appear central to the lived experience of chronic illness, yet the mechanisms underpinning identity are not fully explored. Consequently there is little understanding of the crisis of identity in CFS/ME. Therefore, the aims and objectives of the current research endeavoured to examine identity within the context of the lived experience of CFS/ME.

Drawing upon Wenger’s (1998) ‘Communities of Practice’ theory (CoP), the current research aimed to make transparent the mechanism of identity by exploring the lived experience of identity in chronic illness; specifically CFS/ME. It is argued throughout, that a millennia of meaning underpins the crisis of identity in CFS/ME and that CoP, whilst predominantly a social theory of learning, was re-conceptualised here to illuminate the crisis of identity in chronic illness.

Data were gathered via a closed Facebook group; cfsid, which was created for the purpose of the current research. Participants (n. 37) contributed over time and in depth and in so doing revealed the complex foundation of their shifting identities. The data was analysed using a theoretical thematic analysis (Braun and Clarke, 2006).

Aligned with CoP, the key findings indicate that the mechanism underpinning the crisis of identity in CFS/ME is the changing nature of participation. The history of CFS/ME is one defined by scepticism and as such the controversy surrounding CFS/ME interacted with the lived experience of the illness for participants. The lived experience of CFS/ME for participants was reliably defined by their inability to participate in either life or self. Lives and selves were unrecognisable, but all was not lost as acceptance and adjustment allowed participants to negotiate ways in which they could participate despite their CFS/ME. Participants’ experiences of participation emerged within the analysis as a journey to finding a new way to be in the world. On looking to the future, if people with CFS/ME are to be better supported and enabled within their lived experience of chronic illness, the burdening history of CFS/ME needs to be replaced by legitimacy, and the importance of the negotiation of participation in chronic illness needs to be illuminated further.