Narratives of Young People Living with a Diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Abstract

CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a distressing and potentially debilitating condition. It can also be understood as a contested condition, surrounded by controversy about its nature, causes and treatment. Previous research indicates that those affected experience this climate of contestation as a troubling and discrediting assault, not only on the nature of their condition, but also on their identities. However, little attention has been paid to the voices of young people living with CFS/ME. This thesis extends a relatively small literature in new directions, focusing a constructionist, discursive narrative lens on the accounts of ten young people (aged 13-18) living with a diagnosis of CFS/ME. Narratives constructed during repeated interviews over a year, and drawing on multimodal materials collected by participants over that period, were analysed for their content, structure and performance, with reference to the local and broader contexts of their production. This analysis demonstrates that teenagers construct rich, multi-layered narratives with the potential to enhance understanding of their situation and broader features of the social world. As they speak of the onset of illness, attempts to live with enduring, unpredictable symptoms and their psychosocial consequences, and (for some) the possibility of “moving on” from the worst of illness, this analysis throws new light on how young people’s narratives can be understood as simultaneously constructing the condition (“M.E.”) and the identities of those involved (“me” and others), in ways that engage with, reflect and resist prevailing discourses. It is argued that the discursive contexts of CFS/ME and adolescence raise particular challenges for young people as they try to construct credible narratives that convey the full extent of their difficulties, while resisting stigmatising identities (eg, as “complaining”, “lazy” or otherwise “not normal”). This analysis highlights implications for them, their families and those who work professionally with them; and for the ongoing social construction of CFS/ME in young people.