Networks of Endometriosis: An Analysis of the Social Media Practices of People with Endometriosis

Endometriosis is a chronic inflammatory condition that has been historically underfunded and mistreated despite affecting approximately 200 million people worldwide. In the face of this lacking care, increasing numbers of people with endometriosis have turned to social media, particularly Facebook and Instagram, in search of representation, information, and community. This dissertation is a multidisciplinary analysis of the social media practices of people with endometriosis on Facebook and Instagram between 2018-2022. Using ethnographic and small-data methods for social media analysis, this study highlights the voices of people with endometriosis to consider why and how they go online. The surveys and interviews conducted for this study show that people with endometriosis use social media for a wide range of practices, including information-sharing, community building, meaning-making, and advocacy. This research addresses the following research questions: how and why do people with endometriosis use social media; what draws them to these spaces and what pushes them away; and how do these practices both respond to histories of endometriosis as well as shape the future of the disease? \n \nOn social media, endometriosis is mediated not only through technology, but also through people, conflicts, businesses, discourses, and patient-centred stories. These networks of endometriosis are complex and difficult spaces, but these complexities often reflect already-existent, offline challenges surrounding endometriosis. As a patient-researcher and a person living with endometriosis, I have included my own auto-ethnographic research notes and excerpts from my medical journals within this work, in part to be transparent about my own bias and connections, as well as to illustrate some of the barriers that people with endometriosis face, whether in seeking out care or trying to be represented in research. In this dissertation I argue that, in the face of inadequate care, imperfect social media spaces have become a significant resource for many people with endometriosis and this significance as well as these online contributions should not be dismissed. Rather, by including patient contributions such as these in our research—and validating the turn to social media—we can better understand the needs, values, and networks of the people living with this disease.