Exploring the lived experiences of UK university students with ME/CFS: An interpretative phenomenological analysis

Abstract

Research regarding students with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) has been limited in comparison to the volume of research that has been conducted in relation to other populations with the illness. Exploring the experiences of students with ME/CFS is important due to research reporting that students with invisible illnesses face stigma, discrimination and a lack of empathy, and individuals with ME/CFS face delegitimisation from healthcare professionals and loved ones. This research explored the phenomenological experiences and sense-making processes of eight students with ME/CFS by using online semi-structured interviews, which were enriched by asking participants to think of a metaphor to describe their illness to facilitate the discussion. Interpretative Phenomenological Analysis was used as it enabled the participant’s experience of their illness to be explored without imposing a theoretical framework or a pre-conceived focus on their narratives. Three themes were developed: ‘University as (de)legitimising’, ‘Negotiating disclosure’ and ‘Loss and adaptation’. The theoretical framework of self-esteem was used to explore the findings as it reflected the participants’ accounts. This framework, utilising social identity theory and self-discrepancy theory, provided an understanding of how the participants’ experiences and sense-making processes occurred on both a personal and social level. These findings have important implications for universities, as they demonstrate that they can play a key role in validating the experiences of students with ME/CFS, as well as providing both formal and informal support. The findings also emphasise the key role of social interactions, adding to the limited research regarding the social level in relation to self-esteem. Suggestions are also made for how social identity theory and self-discrepancy theory could be extended to incorporate key experiences of those with a chronic illness.