Sick of the sick role: Narratives of what "recovery" means to people with CFS/ME

Anna Cheshire, Damien Ridge, Lucy V Clark, Peter D White

Research output: Contribution to journalArticlepeer-review

4 Citations (Scopus)
10 Downloads (Pure)

Abstract

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."

Original languageEnglish
Pages (from-to)298-308
Number of pages11
JournalQualitative Health Research
Volume31
Issue number2
Early online date11 Nov 2020
DOIs
Publication statusPublished - Jan 2021
Externally publishedYes

Keywords

  • United Kingdom
  • adaptation
  • chronic
  • coping
  • enduring
  • experiences
  • illness and disease
  • qualitative
  • recovery

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