Abstract
Endometriosis is a chronic, inflammatory condition in which tissue similar to the endometrial lining grows outside the uterus, leading to severe pain, fatigue, and other debilitating symptoms. Despite its significant impact on daily life, many women with endometriosis report that their symptoms are dismissed in medical encounters, as their pain is minimized or normalized as an inherent aspect of womanhood. This medical dismissal, combined with a lack of definitive diagnostic tools and effective treatments, leads many to turn to online support communities to make sense of their symptoms, share experiences, and develop ways to cope with the condition. Drawing on theories of embodiment, epistemic injustice, and online knowledge formation, this study examines how women with endometriosis engage in collective knowledge production that validates their lived experiences of pain. Online discourse creates a collective narrative that encourages women to “listen to the body,” attuning themselves to pain and positioning themselves as experts of their own bodies. This process not only helps women advocate more effectively for themselves, but also motivates them to mobilize and advocate for improved care for all women. Self-management strategies, such as dietary modifications, are a result and evidence of this attunement, illustrating how women navigate life with endometriosis through embodied knowledge and experiential learning rather than reliance on biomedical expertise. By centering the ways women construct and leverage embodied knowledge, this thesis contributes to medical anthropology by highlighting the role of collective knowledge production in shaping chronic illness experiences, specifically the experience of endometriosis, and how that knowledge production challenges dominant biomedical narratives that marginalize women’s pain.
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Graduation Term
Spring 2025
Degree Name
Master of Science (MS)
Department
Department of Sociology and Anthropology: Archaeology
Committee Chair
Gina Hunter
Committee Member
Livia Stone
Committee Member
Kate Driscoll
Abstract
Endometriosis is a chronic, inflammatory condition in which tissue similar to the endometrial lining grows outside the uterus, leading to severe pain, fatigue, and other debilitating symptoms. Despite its significant impact on daily life, many women with endometriosis report that their symptoms are dismissed in medical encounters, as their pain is minimized or normalized as an inherent aspect of womanhood. This medical dismissal, combined with a lack of definitive diagnostic tools and effective treatments, leads many to turn to online support communities to make sense of their symptoms, share experiences, and develop ways to cope with the condition. Drawing on theories of embodiment, epistemic injustice, and online knowledge formation, this study examines how women with endometriosis engage in collective knowledge production that validates their lived experiences of pain. Online discourse creates a collective narrative that encourages women to “listen to the body,” attuning themselves to pain and positioning themselves as experts of their own bodies. This process not only helps women advocate more effectively for themselves, but also motivates them to mobilize and advocate for improved care for all women. Self-management strategies, such as dietary modifications, are a result and evidence of this attunement, illustrating how women navigate life with endometriosis through embodied knowledge and experiential learning rather than reliance on biomedical expertise. By centering the ways women construct and leverage embodied knowledge, this thesis contributes to medical anthropology by highlighting the role of collective knowledge production in shaping chronic illness experiences, specifically the experience of endometriosis, and how that knowledge production challenges dominant biomedical narratives that marginalize women’s pain.
Access Type
Thesis-Open Access
Recommended Citation
Greenslaugh, Rebekah E., "Listening To The Body: Attunement and Advocacy in Women's Experiences of Endometriosis" (2025). Theses and Dissertations. 2074.
https://ir.library.illinoisstate.edu/etd/2074
DOI
https://doi.org/10.30707/ETD.1763755357.954569
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