Patient and Provider Narratives of Functional Neurological Disorders: Convergences and Divergences
Saturday, October 14, 2023
10:30 AM – 11:45 AM ET
Location: Falkland (Fourth Floor)
Functional Neurological Disorders (FND), in which patients experience symptoms of neurological disorders including seizures, paralysis, or movement, but do not show evidence of organic disease, have been called a “crisis for neurology” (Hallett, 2006). Although such conditions are common across medical specialties, providers typically lack clear diagnostic frameworks or successful treatment methods. Patients with such symptoms are highly stigmatized, and provider attitudes towards them are often negative. Improving care for these patients will require developing more robust conceptual resources for the role of medicine at the limits of medical knowledge. The paper seeks to identify priorities for this reconceptualization by examining three sources, each of which has different goals and makes different kinds of claims: the patient narratives collected by the advocacy organization FND Hope; writer Siri Hustvedt’s memoir The Shaking Woman or a History of My Nerves; and physician Suzanne O’Sullivan’s It’s All in Your Head: True Stories of Imaginary Illnesses. Reading across these texts, the paper will clarify convergences and divergences among patients and between patients and providers. I prioritize patient voices, describing how these narratives might disrupt the dominant tropes of the medical mystery genre as exemplified by O’Sullivan’s collection. Including both the explicitly advocacy-oriented materials from FND Hope and Hustvedt’s more lyrical and exploratory text, I will emphasize the diversity of patient voices and the need to think inclusively, capaciously, and creatively about how best to provide care for patients when we confront the limits of medical knowledge.