Feeling like ‘a damaged battery’: Exploring the lived experiences of UK university students with ME/CFS, by Frances Waite, Dely Lazarte Elliot in Fatigue: Biomedicine, Health & Behavior, 23 Aug 2021 [doi.org/10.1080/21641846.2021.1969800]
Research 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,
This was demonstrated in participants’ accounts of experiencing a lack of understanding and validation from their tutors and the disability services at their university.
- Negotiating disclosure
The invisible nature of the illness meant that participants were actively deciding whether to disclose their illness. Participants discussed stigma and the struggles they experienced advocating for themselves. This illustrated how participants felt judged and marginalized.
- Loss and adaptation.
…the participants’ sense of loss of their academic persona, as they could no longer achieve the high standards they were used to… Six participants reported adapting to their new capabilities, such as not setting themselves such high academic standards, making friends with those who did not have such high expectations, and taking up less strenuous relaxation activities.
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.
Extract: Implications
…The practical implications of this research are that universities need to provide further support. Tutors, support staff and students could be provided with information about ME/CFS, delivered in the form of workshops, information sessions or information booklets, and could cover a range of similar illnesses which are also subject to stigma, such as fibromyalgia.
It is important that universities enable students to be the expert on their own illness, by asking them what symptoms they have, and what support they require. This information should be collected by the disability services, put on a student’s file and, with the student’s permission, provided to university staff to prevent students needing to repeat their story. Receiving this legitimization could result in an increase in students’ self-esteem and subjective wellbeing.
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The literature search was based on keywords including “chronic fatigue syndrome and HHV 6,” “chronic fatigue syndrome and HHV-6,” “chronic fatigue syndrome and HHV6,” “chronic fatigue syndrome and Herpes virus 6,” and “chronic fatigue syndrome and Herpesvirus6” in MEDLINE (PubMed), Web of Science, and EMBASE.
An estimated 25% of people with ME are so ill they rarely leave their homes or beds.
Over the past few years my health has deteriorated more and I can do even less than the 5 minutes at a time than I was able to do on occasions. I have developed an interest in computer aided graphics (totally self taught) so I design and draw with my computer a lot of the WAMES graphics you see now.
