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Endometriosis pain and epistemic community: mapping discourses in online discussions among sufferers
Umeå University, Faculty of Social Sciences, Department of Sociology.ORCID iD: 0000-0001-6289-9427
School of Art, Media and American Studies, University of East Anglia, Norwich Research Park, Norwich, United Kingdom.
2023 (English)In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 326, article id 115889Article in journal (Refereed) Published
Abstract [en]

We focused in this study on how the private experience of pain is made public through online discourse by sufferers of endometriosis. Empirically, we analyse two highly active endometriosis communities on the online social platform Reddit. Drawing on a mixed-methods design, we leverage large-scale social data, and a combination of computational and interpretive approaches for text analysis to study the role and shape of interactions relating to ‘pain’ for the formation of epistemic community online around endometriosis. The dataset, consisting of 70,817 forum posts and comments, was collected in May of 2021. Our study shows how pain becomes meaningful for endometriosis sufferers in relation to a multidimensional discursive space of words and concepts that are used to express it. Pain was frequently disguised, underplayed or hidden altogether, from fears of misunderstanding, medical dismissal, and embarrassment. Clearly, peer validation can be found in the relative anonymity of Reddit discussions. While the experience of pain is individual and subjective, when communities share similar experiences this reinforces patient ownership of the pain, which in turn supports the epistemic authority of the patient collective. A detailed understanding of how and why pain is discussed in online spaces has much to contribute more broadly to discussions of experiential collective knowledge production among individuals with endometriosis and other chronic illnesses.

Place, publisher, year, edition, pages
Elsevier, 2023. Vol. 326, article id 115889
Keywords [en]
Endometriosis, Pain, Patient community, Peer support, Social media
National Category
Sociology (excluding Social Work, Social Psychology and Social Anthropology) Peace and Conflict Studies Other Social Sciences not elsewhere specified Other Medical Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:umu:diva-207874DOI: 10.1016/j.socscimed.2023.115889ISI: 000990987900001PubMedID: 37121071Scopus ID: 2-s2.0-85153601819OAI: oai:DiVA.org:umu-207874DiVA, id: diva2:1755662
Funder
Wallenberg FoundationsAvailable from: 2023-05-09 Created: 2023-05-09 Last updated: 2025-02-20Bibliographically approved

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Lindgren, Simon

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