Narrative Matters in Medical Contexts across Disciplines ed. by Franziska Gygax, Miriam A. Locher (review)

This collection of essays discusses the way narratives are used and can be used in the medical field. The authors have a background in various disciplines, from the humanities to psychology and medicine. The wider context of the book is the emerging interest in how people live with and experience diseases. This interest is a result of a growing awareness of how patients’ experiences of their illnesses often affect both the course of the disease and the treatment. Both patients’ and doctors’ experiences are often expressed in stories, a fact that led to an interest in the relation between narrative and medicine in the 1980s. Today, medical doctors are oftentimes expected to listen to and take into account the patient’s illness stories to diagnose diseases correctly, treat the patient, and especially to support patients living with chronic diseases.

In their introduction, Franziska Gygax and Miriam A. Locher detail the research on illness narratives and discuss how storytelling can be used in medical education as a way of promoting a shift of perspective, teaching medical doctors to see the illness from the patient’s point of view. The first part of the volume, titled “Narrative Texts on Illness and Medicine,” focuses on illness and narrative. In the essay “Autism and the American Dream,” Annette Kern-Stähler and Anna Thiemann give an overview of how autobiographical stories written on autism have changed in the US over recent decades. Through an analysis of autobiographies written by people with autism, the essay illuminates the change in how autism was depicted early on as a disorder from which it was possible to recover, while today authors present autism as a variation in human cognition. In “Woundable, around the Bounds,” literary scholar Franziska Gygax discusses life beyond writing and terminal illness. Through analyzing several autobiographical books written by terminally ill authors, Gygax points out that, both for the authors as well as for the (assumed-to-be healthy) readers, narratives on this stage of life document the experience of being in close proximity to death, about which little is known. The reader gets the opportunity to learn about “the knowledge of death that life denies us” (43), while the author—through the act of writing—creates life in death. Through an analysis of autobiographical stories written by fifteenth- and sixteenth-century authors detailing the experience of the pox, literary historian Dominique Brancher discusses the rise and valuation of the subjective experience of illness. The autobiographical stories Brancher studies were part of the emerging Renaissance culture of autobiography, in particular through the writings on the “I.” The pain and symptoms of the disease became part of narrated lives rather than freestanding manifestations of a disease.

The second part of the volume, titled “Narrative Practices in Health Contexts,” focuses on the stories told by ill people in encounters with health-care professionals, researchers, or other ill people with similar experiences. Psychoanalyst Brigitte Boothe discusses how illness narratives are presented in psychoanalytic sessions. She shows that analytic patients tend to use certain recurrent storylines, positioning themselves as, for instance, victims of circumstances. The psychologists Gabriele Lucius-Hoene, Sandra Adami, and Janka Koschack discuss how research interviews aiming at eliciting illness stories can be organized. They stress the importance of organizing the interview situation so interviewees feel invited to share their stories. This feeling can be accomplished by deconstructing the hierarchical imbalance between interviewer and interviewee and approaching interviewees as experts on their illness. Thus, the power relation may shift and open up the space for storytelling. The linguist Cynthia Gordon discusses women’s narratives in an online weight-loss discussion board. The participants join the discussion online and make use of narratives to try to understand an encounter between one of the members of the community and her doctor. The encounter is presented as a narrative and is then analyzed by the other members...