Cooper Silvie, Gilbert Leah
University of the Witwatersrand, Johannesburg, South Africa.
Health (London). 2017 May;21(3):337-353. doi: 10.1177/1363459316677623. Epub 2016 Dec 21.
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.
在“医学定义不明确”病症的概念框架内，本文通过对南非纤维肌痛（一种慢性肌肉骨骼疼痛疾病）的叙事分析，聚焦于“诊断”经历。采用深度访谈从15名参与者那里收集叙事。研究结果表明，通过审视患者与医生、家人、同龄人及同事的互动，可以理解纤维肌痛诊断中存在争议且令人困惑的经历。纤维肌痛作为一种诊断的通行情况以及南非医疗保健系统中存在的不平等现象，构成了症状识别、诊断和治疗的经历特征。分析揭示了纤维肌痛患者如何寻求诊断，并在罕见出现的模糊症状的复杂组合中，努力为自己的经历争取合法性。本研究结果证实了现有证据，即纤维肌痛是一种具有挑战性的疾病经历，这归因于围绕该病症缺乏明确性和合法性以及高度争议性。此外，本研究呈现了在南非背景下，纤维肌痛诊断和治疗机会有限如何塑造这种特定疾病经历，以及运用叙事方法深入了解人们在这种环境中如何应对隐藏且了解不足的病症的价值。
