From sensations to symptoms: The social shaping of functional illness experience

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Functional Neurological Disorder (FND) is a widespread, yet medically unexplained illness that is associated with high levels of distress and disability. Given the current lack of objective biological markers of FND, its symptomology is sometimes characterized as bodily manifestations of underlying psychological illness. Scientists now understand that the mind and body exert strong influences on one another, such that the symptoms of FND and related disorders are affected by mind-body interactions. Yet current medical research focuses on the mind largely without consideration of the social and cultural contexts that shape psychological experiences. This research enhances an understanding of how socially learned expectations and meanings that people associate with their bodily sensations shape their illness experience and influence the way they perceive their symptoms. By analyzing objective markers of FND alongside perceived symptoms and experiences of the disease, and sharing results with clinical practitioners and populations, the research will provide insights that are relevant to clinical practice and support of individuals diagnosed with FND. The investigators test the hypothesis that social contexts shape how individuals experience and understand their symptoms, contributing to science in cultural anthropology that queries the effects of shared culture on health and well-being. This contrasts with hypotheses focused on how individual psychological attributes affect symptomology, instead focusing on how social relationships can reinforce or alter experiences of FND. The research uses an innovative set of research methods to gather data about the lived experiences of people with FND. The researchers test their hypothesis using mixed methods, involving intensive interviewing, questionnaires, a journaling mobile app, and a heart rate monitoring task. Findings from the research will elucidate the relationships between mindsets, social contexts, and symptom perceptions, contributing empirical evidence to test anthropological theories of embodiment and enhancing understandings of the multiple levels affecting FND. Findings will thereby contribute to scientific knowledge about how culture and biology interact to shape health.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.