Scenario Trudy is a 37-year-old female with Motor Neuron Disease.

An illness narrative is a means to create a chronologically-organized plot that gives meaning to the person’s illness experience. The illness narrative is a story the patient tells… to give coherence to the distinctive events and long-term course of suffering . . . The personal narrative does not merely reflect illness experience, but rather it contributes to the experience of symptoms and suffering. (Kleinman 1988:49). In this writing assignment you are asked to interview someone else to develop THEIR illness narrative related to a difficulty navigating a healing institution (managing a serious/chronic disease or mental health diagnosis, or other acute or chronic health events that required people to interact with health professionals). Medical institutions and actors (such as doctors) can focus on fixing more often than on patients’ experiences of their health. They describe illness through numbers or case studies that are meant to be objective (dispassionate, removed) rather than subjective (experienced). When people become ill and undergo medical treatment it is such a disruption or upset to their person and their life that many aspects of that illness are clearly recalled, etched into their memories. Illness events can make for detailed, fascinating stories that tell us much also about how medicine and people relate to each other within society. Developing illness narratives is one way to use biographical accounts to give some power back to a patient when they are marginalized or disempowered within the medical system, and balance against the ways of thinking of disease that dominate how medical professionals work — ways of thinking that leave the disease experience out of the equation. An illness narrative thus also rounds out the record on a disease, ties together loose ends, and can examine how cultural or social context influence the cause, form, or progression of the disease and how the interaction between medical establishment and patient matters greatly for illness outcomes and reveals important power relations or imbalances. It can give power back to those who feel the medical experience took that away or reminded them how little they have. Illness narratives can even help people heal from difficult sickness experiences that caused them to suffer even more, sometimes, than the illness itself. For this assignment, find someone who has experienced such an illness, interview them, and write up the interview as a narrative of their illness experience. You MUST conduct an interview, and you must retain notes or a recording of that interview. This narrative is the person’s story. That is, it should be written in the first person, telling the story through THEIR eyes, from the perspective of the ill person. And your telling of that story must empathize fully with their suffering. Step 1: Plan Your Interview Identify someone you know who might have a good story and be willing to tell it…. like aging relatives who would just love to hear from you. It is best if you can find someone who has struggled with an illness, such as through chronic sickness or difficulty getting a diagnosis or getting adequate care (which is most people with a serious, long-term illness). (If you cannot locate someone to interview who themselves had a long and complex illness, it is ok to interview someone who cared for someone undergoing one and is intimately aware of their struggle… just make sure to explain this in the “orientation” section) Make sure your interviewee knows how long the interview will take before they consent (at least an hour). Read the questions that makeup Kleinman’s model for explaining illness as one way to find questions to ask as you draw the story out from your informant. You will need to adapt them to your interviewee and their circumstances. Review some studies or writing based on illness narratives to get the idea behind the approach. Kaplan-Myrth, N. (2007). Interpreting people as they interpret themselves: Narrative in medical anthropology and family medicine Download Interpreting people as they interpret themselves: Narrative in medical anthropology and family medicine. Canadian Family Physician, 53(8), 1268-1269 O’Rouke, Meghan. 2013. “What’s wrong with me?” The New Yorker, August 26 Schoenberg, N. E., Drew, E. M., Stoller, E. P., & Kart, C. S. (2005). Situating stress: lessons from lay discourses on diabetes Mendenhall, E., Seligman, R.A., Fernandez, A. and Jacobs, E.A. (2010), Speaking through . Medical Anthropology Quarterly, 19(2), 171-193.

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