Experiences and challenges of staying employed with chronic fatigue syndrome

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition that affects individuals’ ability to engage in sustained employment. In India, limited research has explored how working professionals with ME/CFS experience and navigate employment. This study aims to explore the lived experiences of employed individuals with ME/CFS in Kerala. A qualitative study was conducted using Interpretative Phenomenological Analysis (IPA). Ten working professionals with a diagnosis of ME/CFS were recruited purposively from private hospitals in Kerala. Semi-structured interviews were conducted, and data were analysed through in-depth, iterative coding. Five key themes were identified: Changing work identity, Difficulty in communicating, Support at the workplace, Work without stability, and Balancing work and health. Participants described a loss of professional confidence, fear of stigma, the emotional burden of disclosure, and limited formal support. The fluctuating and invisible nature of symptoms challenged their ability to maintain routine work, often requiring major adjustments in career goals and lifestyle. Workplace support varied greatly, with most participants reporting guilt in seeking help and feeling misunderstood. The study highlights the need for workplace policies that acknowledge the fluctuating nature of ME/CFS, promote open communication, and provide flexible accommodations. Raising awareness among employers and co-workers is essential to reduce stigma and support continued employment for individuals with ME/CFS. These findings hold relevance for occupational health, disability inclusion, and public health policy.