A student Doctor of Counselling Psychology, Emma Williams, Manchester Institute of Education has had a thesis published entitled: ‘What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis'
by Emma Williams, Manchester Institute of Education
Summary
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease that affects psychological well-being and educational participation.
- Research aims to explore the psychological and educational experiences of emerging adults living with the ME/CFS, an area that is currently under researched.
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):
- Others don't understand
- Lacking control
- Pushing beyond energy capacity because of pressure, frustration or denial
- Feeling less-than and not enough
- Grief and longing for lost identities
- 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.
Further information
