American Culture Studies Ph.D. Dissertations

“It’s Hell”: Examining Suspicion, Ableism, and Disability Pride through an Intersectional Analysis of Fibromyalgia Experiences

Date of Award

2022

Document Type

Dissertation

Degree Name

Doctor of Philosophy (Ph.D.)

Department

American Culture Studies

First Advisor

Sandra Faulkner (Advisor)

Second Advisor

Jari Willing (Other)

Third Advisor

Timothy Messer-Kruse (Committee Member)

Fourth Advisor

Sarah Rainey-Smithback (Committee Member)

Abstract

The social construction of illness has been important to understand how the experience of being ill varies between people with the same condition. Further, keeping intersectionality at the forefront of an analysis of illness illustrates how ill subjects have different experiences based on their identity. Fibromyalgia is a chronic and contested illness; it is incurable and occurs over the life course after onset and it is subject to debates about what it is by medical practitioners and laypeople. Social sciences research about fibromyalgia has demonstrated high healthcare costs, a low rate of employment, and difficulty contributing to household chores. This project keeps in mind these findings, while shifting the focus from what people with fibromyalgia do and do not contribute to how people with fibromyalgia live their lives. I used thematic analysis of television advertising and 25 participant interviews to determine themes about fibromyalgia and identity. I employed autoethnography and poetic inquiry to explore how pride might work in opposition to ableist expectations about fibromyalgia. I find that people with fibromyalgia are subject to a high degree of suspicion and shame, driven by externalized and internalized ableism. I propose that disability pride can be a useful framework for unsticking internalized ableism and working toward an interdependent and affirming illness experience.

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