An exploratory study of the experience of fibromyalgia diagnosis in South Africa. (May 2017)

• Record Type: Journal Article
• Authors: Cooper, Silvie; Gilbert, Leah
• Is Part Of: Health. Volume 21:Number 3(2017:May)
• Page Start: 337
• Page End: 353
• Publication Date: 2017-05
• Subjects: chronic illness and disability -- experiencing illness and narratives -- narrative analysis -- sociology of health in developing countries; Health -- Periodicals; Health -- Social aspects -- Periodicals; 613.05
• DOI: 10.1177/1363459316677623
• Languages: English
• ISSNs: 1363-4593

Abstract

Within the conceptual framework of 'medically-ill-defined' conditions, this article focuses on the experiences of 'diagnosis' through a narrative analysis of fibromyalgia (a chronic musculoskeletal pain disorder) in South Africa. In-depth interviews were used to collect narratives from 15 participants. The findings show how the contested and confusing experience of fibromyalgia diagnosis can be understood, by viewing the interactions that patients have with their practitioners, families, peers and colleagues. The currency of fibromyalgia as a diagnosis and the inequalities present in the South African health care system characterise the experiences of symptom recognition, diagnosis and treatment. The analysis reveals how those living with fibromyalgia search for diagnosis, and struggle to maintain legitimacy for their experience in the complex constellation of porous symptoms that appear infrequently. The findings of this study confirm the existing evidence that shows fibromyalgia to be a challenging illness experience, which is attributed to the lack of clarity and legitimacy, and high contestation that surrounds the condition. Additionally, this study presents the ways that limited access to diagnosis and treatment for fibromyalgia in the South African context shapes this specific illness experience, and the value of using narrative approaches to gain insight into how people live with hidden and poorly understood conditions in this environment.