TY - JOUR
T1 - Endometriosis pain and epistemic community: Mapping discourses in online discussions among sufferers
AU - Lindgren, Simon
AU - Richardson, Lorna
N1 - Data Availability: The data collection for this paper complied with the Reddit Terms of Service. Individual subreddits may have specific rules about use of the content by researchers, and Reddit also has site-wide user agreements about the use of its API. The subreddits r/endo and r/Endometriosis ask that researchers posting surveys or recruiting for research participants via the subreddits obtain pre-approval. As an anonymised ‘Big Data’ approach to data collection, we did not fit into these categories and obtaining permission from every account that posted on these subreddits would be an enormous and unnecessary task. Ethical approval for this research project was granted by the Swedish Ethical Review Authority, decision number 2020-00899.
Funding Information: The research was kindly funded by the Wallenberg Foundations.
PY - 2023/6
Y1 - 2023/6
N2 - 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.
AB - 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.
KW - Endometriosis
KW - Patient community
KW - Pain
KW - Social media
KW - Peer support
UR - http://www.scopus.com/inward/record.url?scp=85153601819&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2023.115889
DO - 10.1016/j.socscimed.2023.115889
M3 - Article
SN - 0277-9536
VL - 326
JO - Social Science & Medicine
JF - Social Science & Medicine
M1 - 115889
ER -