A narrative study of the illness experience of fibromyalgia in South Africa.

Abstract

This thesis presents the findings of an exploratory study undertaken to investigate the illness experience of fibromyalgia in the context of South Africa. It contains the literature review and conceptual framework that guided the study. The theoretical discussions reflect the approaches to health and illness, illness experience and narrative study, context, diagnosis, prognosis, sickness, illness career, treatment, institutional interactions and social support. Following this, the methodological approaches and tools used in conducting this study are explained. In-depth interviews and diaries were used to collect narratives from 15 participants and one practitioner. Additionally, a brief media content analysis was included in order to assess the public perceptions of fibromyalgia in South African news articles. The themes of legitimacy, credibility, flexibility, and accommodation are continually developed throughout the thesis. The Analysis of Findings chapter presents and discusses the evidence gathered from the investigations undertaken in this study. This chapter shows how the contested and confusing illness experience of fibromyalgia can be understood, by viewing the interactions that patients have with their practitioners, families, peers and colleagues. The meanings ascribed to fibromyalgia as a label, and the uncertain prognosis attached to the diagnosis, as well as infrequently effective treatment options are explored here. The gains found in successful practitioner-patient interactions, and the limitations of medical aid coverage for chronic conditions like fibromyalgia in South Africa are discussed in this chapter. The role of family and peers, as well as workplaces and colleagues in offering support to those living with fibromyalgia is analysed. Finally, the conclusions arising from this study are presented, and recommendations for areas of future engagement and research are offered in order to attain a better understanding of the experience and impact of fibromyalgia in the South African context.