Telling stories about illness and disability: the limits and lessons of narrative

Perspect Biol Med. Winter 2010;53(1):121-35. doi: 10.1353/pbm.0.0135.

Abstract

Autobiographical narratives of illness and disability are influential in popular and medical discourses of illness and disability, in part because these narratives represent illness and disability within a sociocultural context, intersecting with other categories of difference. Clinicians can benefit patients through a critical understanding of the formal and social conventions that shape illness and disability narratives and the effect these conventions can have on the lived experience of illness and disability. I analyze the 2003 edition of Lucy Grealy's Autobiography of a Face to illustrate these socio-narrative conventions, especially in light of an afterword that significantly revises the ending to Grealy's narrative. I explore the parallels between narrative conventions-such as the "recovery narrative"-and caregivers' expectations that shape the role of the "good patient," as well as the resistance to conventions of closure, represented by the "renegotiated ending."

MeSH terms

  • Adaptation, Psychological*
  • Attitude to Health*
  • Caregivers / psychology
  • Disabled Persons / psychology*
  • Humans
  • Narration*
  • Patients / psychology*
  • Physician-Patient Relations