Self-help literature and the making of an illness identity: The case of fibromyalgia syndrome (FMS)
Self-help literature and the making of an illness identity: The case of fibromyalgia syndrome (FMS)
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DOI：
10.1525/sp.2002.49.3.279
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发表时间：
2002-08-01
期刊：
影响因子：
3.2
通讯作者：
Barker, K
中科院分区：
文献类型：
--
作者：
Barker, K
纤维肌痛综合征（FMS）是一种有争议的疼痛疾病。在生物医学词汇中，FMS是一种功能性躯体综合征，或者说是一种没有器质性解释或可证实的生理异常的疾病。大约有600万美国人被诊断患有FMS;几乎所有被诊断的人都是女性。我的方法FMS使用的见解，从疾病的经验和身份形成的文献。特别是，我探讨FMS自助文学，促进创建一个疾病的身份的机制。通过对五本最畅销的FMS自助书籍的定性分析，我展示了一个公共的FMS疾病叙事如何鼓励将不同的经历组织成一个统一的疾病身份。此外，我演示了如何允许的边界，这种身份功能，以减少自我怀疑和异化的背景下，生物医学是无法使FMS可见。我通过对FMS患者的采访来支持这些说法，以展示他们如何将这些文本解读为他们的生活疾病经历，以及他们的生活经历如何被解读为这些文本。最后，我认为，这里描述的疾病身份形成的过程并不局限于FMS，甚至也不局限于其他有争议的疾病。疾病身份的形成是参与与健康有关的自助社区的普遍结果，是当代医疗化进程的组成部分。
Fibromyalgia syndrome (FMS) is a controversial pain disorder. In biomedical lexicon FMS is a functional somatic syndrome, or an illness for which there is no organic explanation or demonstrable physiological abnormality. Approximately six million Americans are diagnosed with FMS; nearly all of those diagnosed are women. I approach FMS using insights from the illness experience and identity formation literatures. In particular, I explore the mechanisms within FMS self-help literature that facilitate the creation of an illness identity. Through a qualitative analysis of the five best-selling FMS self-help books, I demonstrate how a public FMS illness narrative encourages the organization of dissimilar experiences into a unified illness identity. Additionally, I demonstrate how the permissive boundaries of this identity function to reduce self-doubt and alienation in a context were biomedicine is unable to make FMS visible. I support these claims using interviews with FMS sufferers to show how they read these texts into their lived illness experiences and how their lived experiences are read onto these texts. Finally, I contend that the processes of illness identity formation described here are not exclusive to FMS or limited even to other contested illnesses. The formation of illness identities is a common consequence of participation in health-related, self-help communities generally and is integral to contemporary processes of medicalization.