What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis

Abstract

Background: Emerging adulthood has been described as a life stage between adolescence and adulthood. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) is a highly intrusive condition with symptoms impacting psychological wellbeing and educational participation and enjoyment. Aim: Much of the qualitative research regarding ME/CFS has been conducted with children, adolescents or adults. The experiences of emerging adults has gone under-researched. This research aims to better understand and advocate for the psychological and educational wellbeing of emerging adults living with ME/CFS. Methodology: Through semi-structured interviews, five emerging adults shared their psychological and educational experiences of life with ME/CFS. Interpretative phenomenological analysis (IPA) was used to ideographically explore meaning and sense-making. Findings: Analysis found six group experiential themes (GETs): (1) others don’t understand, (2) lacking control, (3) Pushing beyond energy capacity because of pressure, frustration or denial, (4) Feeling less-than and not enough, (5) grief and longing for lost identities, and (6) inconsistent educational support. Conclusion: Feeling misunderstood was at the heart of many psychological and educational experiences. Efforts to become better understood meant participants spent precious energy educating others. All participants reported ME/CFS has restricted their lives, bodies or future. A detrimental tendency to push beyond energy capacity was exacerbated by pressure, frustration and/or denial. Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs. Implications: Participants described a desire to feel less judged and better understood. It may be beneficial for family, friends and peers to identify unkind bias and suspend unevidenced judgement. The same actions made by education professionals can help reduce disability discrimination in schools, colleges and universities. Online teaching, deadline extensions, resources in additional formats, early access to lecture materials and personalised, well disseminated academic access plans may help students living with ME/CFS to feel better supported within the academic arena.

Date of Award	6 Jan 2025
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Ishba Rehman (Supervisor) & Terry Hanley (Supervisor)