UCL Institute of Education, College London, London WC1H 0AL, UK.
Int J Environ Res Public Health. 2021 Dec 29;19(1):333. doi: 10.3390/ijerph19010333.
This sociological article reports an empirical study into the lived experience of fibromyalgia. It includes 28 participants (26 women, 2 men) with a formal diagnosis of fibromyalgia. Data collection consisted of the completion of an identity box project and subsequent interviews. Data analysis followed the principles of iterative, inductive, semantic thematic analysis, and led to the identification of four major themes: the role of the social in making sense of the experience, the process of redefining lifegoals, the refusal to accept fibromyalgia as a diagnosis, and the consideration of identifying as a patient. These themes in turn demonstrate four forms of resistance against processes of marginalisation amongst those who have been diagnosed with fibromyalgia: (1) the incorporation of societal expectations and norms into their life-stories; (2) the re-making the lifeworld at a cerebral level through redefining reality and creating a new, socially acceptable reality; (3) the active rejection of the fibromyalgia diagnosis; and (4) the employment of active and pro-active countermeasures to assuming the sick role.
这篇社会学文章报告了一项对纤维肌痛患者生活体验的实证研究。研究对象为 28 名（26 名女性，2 名男性）经正式诊断为纤维肌痛的患者。数据收集包括填写身份框项目和随后的访谈。数据分析遵循迭代、归纳、语义主题分析的原则，得出了四个主要主题：社会在理解体验中的作用、重新定义生活目标的过程、拒绝接受纤维肌痛作为诊断以及考虑将自己定义为患者。这些主题反过来展示了四种形式的抵抗，即那些被诊断患有纤维肌痛的人抵制边缘化的过程：（1）将社会期望和规范融入他们的生活故事；（2）通过重新定义现实和创造新的、社会可接受的现实，在大脑层面上重新构建生活世界；（3）积极拒绝纤维肌痛的诊断；（4）采取积极主动的对策来承担患者角色。
