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International journal of qualitative studies on health and well-being, 2023-12, Vol.18 (1), p.2223420-2223420
2023
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Details

Autor(en) / Beteiligte
Titel
Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome
Ist Teil von
  • International journal of qualitative studies on health and well-being, 2023-12, Vol.18 (1), p.2223420-2223420
Ort / Verlag
United States: Taylor & Francis
Erscheinungsjahr
2023
Quelle
Applied Social Sciences Index & Abstracts (ASSIA)
Beschreibungen/Notizen
  • The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. This study's purpose is to provide insight into people's experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants' experiences and understandings. We present the result through one participant's story. The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

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