Diagnostic experience of patients with fibromyalgia - A meta-ethnography

Abstract

Objective To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia syndrome. Methods A systematic literature search of qualitative studies up to May 2016 was performed. Twenty-eight reports including information on patients' diagnostic experiences were subjected to an interpretive analysis in accordance with the principles of meta-ethnography. Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness. Great relief was felt at finally achieving the fibromyalgia syndrome diagnosis. However, relief waned when therapies proved ineffective. Health professionals and others questioned whether individuals were genuinely ill, that the illness had a psychological nature, and whether they were doing their best to recover. The diagnosis did not provide a meaningful explanation of individuals' suffering and had limited power to legitimate illness. Patients felt blamed for their failure to recover, threatening their personal credibility and moral identity. Conclusion The fibromyalgia syndrome diagnosis has limitations in validating and making sense of patients' illness experiences and in providing social legitimation of their illness. Social relationships are strained during the diagnostic process and in the course of ineffective therapies.

Keywords: Fibromyalgia; contested illness; diagnostic experience; legitimacy; meta-ethnography; metasynthesis.