Narratives of Partners of Individuals Affected by Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract

Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded in uncertainty and dispute. Research suggests this context to have a profound bearing on those touched by the condition, impacting significantly on their experience and the narratives constructed thereof. However, no studies examining the narratives of partners of individuals affected by CFS/ME appear to have been carried out to date. Based upon this gap in the literature, this study sought to hear the narratives of partners of adults living with CFS/ME, giving particular consideration to the ways in which these narratives were told to an outsider, and how the outsider may have influenced the narrative. Methodology: This study drew on a qualitative approach. A purposive sample of six partners of adults affected by CFS/ME (4 men and 2 women) was recruited. Individual interviews were conducted that were audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts, focusing principally on how participants narrated their accounts, as well as on the content of narratives and the narrative and discursive features that shaped the telling of the accounts. Analysis and Findings: Multiple readings of the narratives identified two areas of collective focus within participants’ accounts – ‘stories from then’ and ‘stories from now’. Some similarities in how ‘stories from now’ were told were seen to emerge down gender lines. Notably participants’ storytelling could be seen to represent a form of response to wider narratives that purvey around CFS/ME, with participants’ being observed to construct particular meanings around CFS/ME, as well as particular ‘identities’ of themselves, their partner, their relationship and ‘others’ who had played a key role in their story of living with the condition. The findings are discussed in terms of their potential bearing for clinical practice and future research endeavours. In addition, the strengths and the limitations of the research are considered.