"Governed by the pain": narratives of fibromyalgia

Disabil Rehabil. 2012;34(16):1358-66. doi: 10.3109/09638288.2011.645114. Epub 2012 Jan 23.

Abstract

Purpose: Fibromyalgia (FM) is a chronic syndrome characterized by pain and fatigue. The aim of this study was to explore how individuals with FM make sense of the illness experience and integrate it into their personal biographies.

Method: Ten women from a pain management service in the north west of England were interviewed for the study. A chronological summary of each life story was produced and narrative features such as plot, tone, imagery and metaphors were identified and compared.

Results: Findings are presented in the form of a meta-narrative incorporating all 10 narratives over five phases: (1) making sense of FM: when I was younger, I didn't have any problems at all; (2) onset and diagnosis: you just feel like you're constantly complaining; (3) invasion of FM: you're just trapped; trapped in this body; (4) coping with FM: you try to do things in a pattern it will obey and (5) ongoing struggle: I refuse to give in to it.

Conclusions: The narrative is characterized by a lack of movement and resolution, with participants engaged in an enduring struggle against the challenges of FM. Psychological approaches that facilitate this ongoing adjustment process may prove beneficial in FM treatment and rehabilitation.

MeSH terms

  • Activities of Daily Living
  • Adaptation, Psychological
  • Adult
  • Aged
  • England
  • Female
  • Fibromyalgia / diagnosis
  • Fibromyalgia / psychology*
  • Humans
  • Interviews as Topic
  • Longitudinal Studies
  • Middle Aged
  • Narration
  • Pain / psychology*
  • Pain Management
  • Quality of Life*
  • Sickness Impact Profile
  • Socioeconomic Factors