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

Abstract

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.