Date on Master's Thesis/Doctoral Dissertation

12-2023

Document Type

Doctoral Dissertation

Degree Name

Ph. D.

Department

English

Degree Program

English Rhetoric and Composition, PhD

Committee Chair

Kopelson, Karen

Committee Co-Chair (if applicable)

Maxwell, Kristi

Committee Member

Maxwell, Kristi

Committee Member

Olinger, Andrea

Committee Member

Yergeau, M. Remi

Author's Keywords

Rhetoric; healthcare; rare disease; commonplaces; qualitative; myositis

Abstract

As healthcare becomes more complex, automated, and bureaucratic, patients often suffer from a lack of resources, agency, and visibility when seeking medical care. Rhetoric and Composition, specifically the subfield of Rhetoric of Health and Medicine (RHM), is interested in studying and intervening into such issues. One way to challenge our current understanding of healthcare is to consider how the rare disease patient experience reveals the gaps, limitations, and assumptions of illness and health. I argue here that through rare diseases, rhetoricians of health and medicine can better understand the representation, advocacy, and patient experience within healthcare, and potentially lead to improved patient outcomes. Over the five chapters of this dissertation, I first identify commonplaces, or ideologically constructed assumptions that underpin arguments, that are made visible through the rare disease patient experience. Then, after identifying healthcare-specific commonplaces, including illness is visible, medical expertise validates patient agency, and compliance leads to health, I examine how rare disease patients utilize rhetorically savvy strategies to transform these commonplaces and access resources they need—such as diagnoses, treatments, and health policy changes. First, in Chapters 2 and 3, I examine how commonplaces shape various texts, including popular medical dramas and testimonials from rare disease advocates. These texts use commonplaces to engage their audiences, and while medical dramas uphold them, rare disease advocates will often subvert these commonplaces to make a point about rare disease and call for specific legislation or political action. I then move to a qualitative study of one rare disease patient community, those with the rare, idiopathic inflammatory muscle disease, myositis, in Chapter 4. Through interviews with eight patients, I identify how patient communities transform commonplaces and potentially become generative sites of empowerment. In Chapter 5, the conclusion, I consider the implications of commonplaces and rare disease narratives in RHM, disability studies, and narrative. Ultimately, I argue that rare disease narratives allow us to trace the role commonplaces play in our interactions with healthcare, and once we better understand those interactions, we can create interventions to better support this community, both in and out of the clinic.

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