Illness Narratives: A Brief History

1. Illness Narratives: A Brief History Trisha Paul Unless otherwise noted, this material is made available under the terms of the Creative Commons Attribution-ShareAlike 3.0 License.

2. What are illness narratives? “Expressions about or around the experience of being ill” • Can take many forms • Art • Film • Dance • Literature • Can be told from a variety of different perspectives • Health professionals • Loved ones • Those with illness

3. Disease vs. Illness • Distinction coined by sociologist Arthur Kleinman(1988) in Illness Narratives: Suffering, Healing, and the Human Condition • Disease • Pathological and biological condition • Primary concern of medicine • Rooted in the physical body • Illness • “Innately human experience of symptoms and suffering” (1) • Social and cultural effects of living with disease • Personal and subjective experience of illness

4. Where did they come from? • Illness narratives surfaced in the 1970s • Factors that contributed to increased illness narratives • Evolution of medicine • Evolution of narrative

5. Evolution of Medicine • Technology advances • Progression of scientific research • Growing emphasis on treating the ‘disease’ in medicine • Bodily disorder privileged • Increased medicalization of death • Death moves from the comfort of one’s home to the hospital setting

6. Evolution of Narrative • Until 1950s, autobiography as accurate and undisputable account of the cohesive self • 1960s: self as socially and culturally constructed, begins to disrupt traditional autobiographical representations • 1970s: autobiography increasingly focuses on the self in discord • Increasingly embraced by women’s studies, ethnic studies, African American studies, Holocaust studies • Method of giving voice to the experiences of marginalized populations

7. Emergence of Pathographies • Literary scholar Anne Hunsaker Hawkins (1999) in Reconstructing Illness: Studies in Pathographies • “autobiographical or biographical narrative about an experience of illness” (229) • Narratives arose in response to the increased medicalization of illness • Patient empowerment through expression

8. Illness Narratives Today • How do you think the genre may have evolved over the years? • What are some of the current controversies surrounding illness narratives today? • Keeping in mind Frank’s illness narrative categories, how do you think the kinds of narratives we tell might have changed, if at all?

9. Works Cited • Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford UP, 2006. • Hawkins, Anne Hunsaker. Reconstructing Illness: Studies in Pathography. West Lafayette, IN: Purdue UP, 1993. • Kleinman, Arthur. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic, 1988. Print.