[CFS-L] Feeling like 'a damaged battery'

[Dr. Marc-Alexander Fluks]

Source: Fatigue: Biomedicine, Health & Behavior
Preprint
Date: August 23, 2021
URL:
https://www.tandfonline.com/doi/full/10.1080/21641846.2021.1969800


Feeling like 'a damaged battery': Exploring the lived experiences
of UK university students with ME/CFS
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Frances Waite(1,*), Dely Lazarte Elliot(2)
1 Institute of Psychiatry, Psychology and Neuroscience, King's
College London, UK.
2 School of Education, College of Social Sciences, University of
Glasgow, UK
* Corresponding author. Email: frances.s...@gmail.com

Received 23 Jun 2021
Accepted 13 Aug 2021
Published online: 23 Aug 2021


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.

Keywords: ME, CFS, university students, chronic illness, self-esteem

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(c) 2021 Taylor & Francis Group
(c) 2021 IACFS/ME