Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies

Abstract

Objective: To provide insight into patients' and doctors' experiences with CFS.

Methods: We compiled available qualitative studies and applied meta-ethnography to identify and translate across the studies. Analysis provided second-order interpretation of the original findings and developed third-order constructs from a line of arguments.

Results: Twenty qualitative studies on CFS experiences were identified. Symptom experiences and the responses from significant others could jeopardise the patients' senses of identity. They felt severely ill, yet blamed and dismissed. Patients' beliefs and causal attributions oppose the doctor's understanding of the condition. For the patient, getting a diagnosis and knowing more was necessary for recovery. Doctors were reluctant towards the diagnosis, and struggle to maintain professional authority. For patients, experience of discreditation could lead to withdrawal and behavioural disengagement.

Conclusion: The identities of CFS patients are challenged when the legitimacy of their illness is questioned. This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms. CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.

Practice implications: Doctors can support patients' coping by supporting the strong sides of the patients instead of casting doubt upon them.