From sensation to symptom: The social shaping of functional illness experience

Project: Research project

Project Details

Description

Conversion, or Functional Neurological Disorder (FND) is an illness distinguished by symptoms that mimic those of other neurological disorders like epilepsy or Parkinson’s disease, but without apparent pathophysiology. Illnesses like FND underscore what has become increasingly clear: that mind and body exert profound mutual influences on one another with important implications for illness and healing. Yet the biomedically-oriented models of mind-body processes used to understand conditions like FND often elide the role of shared and individual meanings in shaping these processes. We argue that this is part of the reason that, although it is surprisingly widespread, FND is still poorly understood, is associated with high levels of distress and disability, and has a poor prognosis, with over half of patients failing to recover even with treatment. Anthropological models of “embodiment” have illuminated the crucial roles of personal and social meanings and models, social experience and context in the dynamics of mind-body processes, but often lack specificity concerning the mechanisms through which material, biological bodies both shape and are shaped by meaning. This study will investigate the mechanisms through which meaning is embodied within the context of FND, in order to contribute to our understanding of embodiment in general and FND in particular. Specifically, we propose to use a mixed, biocultural methodology, including in-depth, qualitative interviews, microphenomenology, Ecological Momentary Assessment, structured questionnaires and a heart-rate tracking task with FND patients and their personal caregivers, to test a model of embodiment that links bodily states and individual and social meanings in mutually reinforcing loops. In particular, we hypothesize that the way in which social meanings influence how individuals perceive and attend to their bodily sensations plays a central role in this looping process. We refer to the sociocultural influence on appraisals of bodily sensations as “interoceptive affordance.” We propose to empirically investigate the looping process through which interoceptive affordances cause internal cues to be perceived as symptoms of neurological illness by FND patients. We will do so by honing-in on how 1.) body-related meanings are acquired, internalized, and retained and 2.) meanings shape attention to and perceptions of sensations. We hypothesize that sociocultural scaffolding is crucial to the acquisition, internalization, and retention of operant bodily meanings. We therefore propose to study the embodiment of meaning in FND with a particular attention to intersectional factors (e.g. ethnicity, race, and gender/sexuality). In the case of FND, gender-related meanings are likely to be particularly relevant given that a disproportionate number of FND patients are female.

Intellectual Merit: Empirically supporting anthropological models of the mechanisms of embodiment. More here…Previous studies have not used measures of interoceptive awareness with FND patients. Existing literature on interoception lacking attention to meaning and context.
This study will be the first to relate intersectional determinants (gender, race/ethnicity, SES) with interoceptive habits and their impact on FND, contributing not only to the theoretical understanding of the interplay between culture and biology, but also to the deconstruction of naturalized structural vulnerabilities.

Broader Impacts: FND is widespread, intractable, and associated with high levels of suffering and disability as it is not we
StatusNot started
Effective start/end date8/1/217/31/23

Funding

  • National Science Foundation (BCS-2051512)

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