Source: Fatigue: Biomedicine, Health & Behavior
Date: August 23, 2021
Feeling like 'a damaged battery': Exploring the lived experiences
of UK university students with ME/CFS
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
* Corresponding author. Email: frances.s...@gmail.com
Received 23 Jun 2021
Accepted 13 Aug 2021
Published online: 23 Aug 2021
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.
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.
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.
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
(c) 2021 Taylor & Francis Group
(c) 2021 IACFS/ME