Beyond the silence of the body: medical anthropology and the healing vocation in rare diseases
Giovanni Scarafile2025, CommunICare
https://doi.org/10.6084/m9.figshare.28690241visibility
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Abstract
In this article, I examine the phenomenological and anthropological dimensions of rare disease experiences. Drawing on medical anthropology frameworks and O'Rourke's illness narrative, I analyze how rare diseases transform the body from a transparent medium into an opaque object that disrupts identity and worldly relations. I focus on three key themes: (1) the phenomenological rupture in undiagnosed illness, where subjective suffering meets social invisibility; (2) the essential dialogue between biomedical knowledge and anthropological understanding in contexts where traditional categories fail; and (3) the enduring healing vocation that persists despite systemic healthcare pressures. Integrating frameworks from Csordas, Kleinman, Good, and Frank, I demonstrate how rare diseases reveal broader truths about illness experience. Effective care requires recognizing patients as persons whose experiences demand legitimation, addressing both biological and existential dimensions of suffering.
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