Sick of the Sick Role: Narratives of What Recovery Means to People With CFS/ME

Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention, and analyzed via constant comparison. The meaning of recovery differed between participants-expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the sick role, with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of normality.

Automated summary

Recovery for individuals with chronic fatigue syndrome/myalgic encephalomyelitis varies, with some seeing it as freedom from symptoms, others defining it as regaining functionality, and some rejecting the concept altogether, highlighting the complexity of understanding and experiencing recovery for this chronic health condition.