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Updated: Sep 29, 2026

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Published on: June 2, 2014
When the Doctor Doesn't Know: Exploring the Liminal Space Occupied by Patients and Caregivers Living with Cyclic
Abstract:
Cyclic Vomiting Syndrome (CVS) is a poorly understood and frequently stigmatized chronic condition characterized by recurrent, disabling episodes of nausea and vomiting. This qualitative study analyzes illness narratives from adults living with CVS and their caregivers, drawing on a modified social practice framework to examine how individuals navigate diagnostic uncertainty, clinical dismissal, and systemic neglect. Participants describe a pattern of epistemic rupture-where the failure of healthcare professionals to recognize and validate their suffering undermines not only clinical relationships, but also broader trust in medical institutions. We interpret these dynamics through the lens of epistemic injustice, highlighting the ethical stakes of credibility deficits in contested illness contexts. By attending to how participants reframe their experiences through tactical adaptation and narrative self-positioning, the paper contributes to emerging interdisciplinary conversations on diagnostic harm, legitimacy work, and the ethical dimensions of illness experience.
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