Feeling like 'a damaged battery': exploring the lived experiences of UK university students with ME/CFS

Waite, F. and Elliot, D. L. (2021) Feeling like 'a damaged battery': exploring the lived experiences of UK university students with ME/CFS. Fatigue: Biomedicine, Health and Behavior, 9(3), pp. 159-174. (doi: 10.1080/21641846.2021.1969800)

Abstract

Introduction: Research regarding students with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) has been limited. This study aimed to understand how their subjective well-being had been affected by their condition by exploring their experiences and sense-making processes. Methods: Semi-structured interviews were conducted with eight students using video-calling software and were enriched by asking participants to think of a metaphor to describe their illness. Interpretative Phenomenological Analysis was used to analyze the interviews. Results: Three themes were developed: University as (de)legitimizing, Negotiating disclosure and Loss and adaptation. Rosenberg’s conceptualization of self-esteem was used as a framework to explore the findings as it reflected participants’ accounts and provided an insight into their subjective well-being. Participants discussed their reduced self-esteem through experiences of delegitimization and stigma at their universities, as well as how they became more accepting of their illness and increased their self-esteem. Conclusion: This study provides an understanding of how the lives of students with ME/CFS have been affected by their condition, including their experiences at university and in their social context. Participants raised potential avenues in which universities can act in a supportive manner to be empowering and enhance self-esteem, which is important due to the debated nature of the illness.

• Item Type: Articles
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Elliot, Dr Dely
• Authors: Waite, F., and Elliot, D. L.
• College/School: College of Social Sciences > School of Education; College of Social Sciences > School of Education > People, Place & Social Change
• Journal Name: Fatigue: Biomedicine, Health and Behavior
• Publisher: Taylor and Francis
• ISSN: 2164-1846
• ISSN (Online): 2164-1862
• Published Online: 23 August 2021
• Copyright Holders: Copyright © 2021 The Authors
• First Published: First published in Fatigue: Biomedicine, Health and Behavior 9(3): 159-174
• Publisher Policy: Reproduced under a Creative Commons License