Quest, chaos and restitution: living with chronic fatigue syndrome/myalgic encephalomyelitis

Soc Sci Med. 2006 May;62(9):2236-45. doi: 10.1016/j.socscimed.2005.09.008. Epub 2005 Oct 19.


Chronic illness is disruptive, threatening people's sense of identity and taken for granted assumptions. Transformations in values, expectations and life priorities are likely to be experienced and in order to regain a coherent sense of self, people must interpret their experiences. People with difficult to diagnose illnesses can find themselves living with greater uncertainty and stigma. This paper explores how people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) describe and interpret their illness experience by applying Arthur Frank's narrative typologies to analyse interviews with 17 British people with CFS/ME. The analysis proposes that a trajectory of narrative typologies is experienced, starting with a restitution narrative, moving to a chaos narrative and, for most, back to a restitution narrative and on to a quest narrative. The presentation of narrative types put forward by people living with CFS/ME differ to those presented by people who are HIV positive and have been treated for breast cancer.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Chronic Disease
  • Cost of Illness*
  • England
  • Fatigue Syndrome, Chronic*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged