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被封锁的身体:患有 ME/CFS 的年轻女性在儿童和青少年时期严重患病的叙述。

Bodies in lockdown: Young women's narratives of falling severely ill with ME/CFS during childhood and adolescence.

机构信息

Department of Physiotherapy, Faculty of Health Sciences, Oslo Metropolitan University, Oslo, Norway.

Children's Surgical Department, Division of Head, Neck and Reconstructive Surgery, Oslo University Hospital, Oslo, Norway.

出版信息

Health Care Women Int. 2023 Sep;44(9):1155-1177. doi: 10.1080/07399332.2022.2043862. Epub 2022 Apr 11.

Abstract

Thirteen women (16-30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

摘要

十三位女性(16-30 岁)讲述了她们在儿童和青少年时期患肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)的经历。我们采用现象学为基础的叙述分析方法,得出了三个核心主题:我曾经过着积极而有意义的生活;逐渐变得陌生和感觉被推向边缘;被遗弃在一旁。从无法理解和不可预测的情况中,人们逐渐了解到她们所经历的磨难的程度,以及可能使情况恶化的建议。这描绘了一种逐渐发展的不确定、陌生的生活状况,没有未来康复的前景。

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