Marginalization and the Construction of Mental Illness Narratives Online: Foregrounding Institutions in Technology-Mediated Care

Abstract

People experiencing mental illness are often forced into a system in which their chances of finding relief are largely determined by institutions that evaluate whether their distress deserves treatment. These governing institutions can be offline, such as the American healthcare system, and can also be online, such as online social platforms. As work in Human-Computer Interaction (HCI) and Computer Supported Cooperative Work (CSCW) frames technology-mediated support as one method to fill structural gaps in care, in this study, we ask the question: how do online and offline institutions influence how people in resource-scarce areas understand and express their distress online? We situate our work in U.S. Mental Health Professional Shortage Areas (MHPSAs), or areas in which there are too few mental health professionals to meet expected needs. We use an analysis of illness narratives to answer this question, conducting a large scale linguistic analysis of social media posts to understand broader trends in expressions of distress online. We then build on these analyses via in-depth interviews with 18 participants with lived experience of mental illness, analyzing the role of online and offline institutions in how participants express distress online. Through our findings, we argue that a consideration of institutions is crucial in designing effective technology-mediated support, and discuss the implications of considering institutions in mental health support for platform designers.