Travers, Michele Kerry, Lawler, Jocalyn · Social science & medicine (1982) · 2008 · DOI
This study explored how people with ME/CFS experience their illness and how they cope with it, based on interviews with 19 Australian adults (including 3 who recovered). Researchers found that people with ME/CFS often feel their sense of self is damaged by the illness, and they use two main strategies to manage this: protecting themselves (the Guardian Response) and rebuilding their lives with new meaning (the Reconstructing Response). The study shows that living with ME/CFS involves an ongoing struggle as people balance these coping strategies depending on how severe their symptoms are at any given time.
This study validates the psychological and existential burden of ME/CFS beyond physical symptoms, addressing the frequently overlooked impact on identity and sense of self. Understanding these coping mechanisms can help healthcare providers offer more compassionate, holistic care and help patients recognize their adaptive strategies as meaningful responses rather than failures. The research counters the 'contested' nature of CFS by centering patient experience as legitimate medical knowledge.
This qualitative study does not establish the biological mechanisms of ME/CFS, measure the prevalence of these psychological experiences population-wide, or prove that these coping strategies are universally effective. The findings reflect subjective patient narratives and cannot determine whether self-violation is a direct consequence of illness pathology or influenced by social stigma and medical skepticism.