Mediating Pain: Navigating Endometriosis on Social Media

Abstract

With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.