ORCID

https://orcid.org/0000-0002-5524-9001

Date of Award

5-6-2025

Author's School

Graduate School of Arts and Sciences

Author's Department

Anthropology

Degree Name

Doctor of Philosophy (PhD)

Degree Type

Dissertation

Abstract

This study examines how people living with complex, medically underdetermined chronic illnesses make sense of their experiences through self-experimentation mediated by online forums and self-help groups in a cultural context characterized by significant controversy surrounding the status of science, expertise, and conventionally authoritative knowledge-producing institutions. Using virtual and conventional ethnography and critical media studies methods, it finds that the fragmentary and decentralized nature of the U.S. healthcare system intensified the interpretive challenges associated with complex chronic illnesses: information was extremely abundant, but deciphering its accuracy, reliability, and relevance proved difficult. In this context, participants relied on experiential knowledge to filter, mediate, and make sense of knowledge from other sources. Placing these findings in the historical context of ubiquitous medical pluralism in the U.S. and globally, I argue that what is unique about medical science in the present is not its coexistence with other modalities of healing, but its imbrication in an inherently fragmentary information technology ecosystem. Drawing on medical anthropology and postcolonial science and technology studies, I argue that medical pluralism itself is not inherently threatening to or incompatible with biomedicine or biomedical public health goals. Further, the ethnographic data strongly suggest that, for this population, it is not alternative epistemologies or anti-science ideology that drive people away from biomedicine, but lack of access to quality care. Information infrastructures that support discernment and improved biomedical care are more likely to result in increased trust in and uptake of biomedicine, regardless of whether or not patients also engage other modalities of healing.

Language

English (en)

Chair and Committee

Talia Dan-Cohen

Committee Members

Alice Marwick; Bret Gustafson; Corinna Treitel; Maddalena Canna; Rebecca Lester

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