Practicing Patienthood Online: Social Media, Chronic Illness, and Lay Expertise

Abstract

The use of digital technologies and social media by people with serious illness to find, share, and create health information is much celebrated but rarely critiqued. Proponents laud “Health 2.0” as transforming health care practice and empowering patients. Critics, however, argue that a discourse of developing lay expertise online masks the disciplinary practices of the neoliberal state’s emphasis on individual responsibility. Notably, the perspectives of people who are engaging with social media related to their health and illness are under-represented in this debate. This research examines the experiences and perspectives of women who blog about their lives with Multiple Sclerosis in order to situate them in the context of these conflicting ideologies. Methods consisted of an ethnographic content analysis (N = 40), an online survey (n = 20), and an online discussion forum (n = 9). Findings revealed that blogging is neither inherently empowering nor inevitably disciplinary. Rather, it simultaneously offers opportunities for patients to gain medical knowledge and resist medical patriarchy, as well as compounds expectations placed upon patients to assume greater responsibility for managing their care.

Keywords

• social media
• blogging
• Multiple Sclerosis
• Health 2.0
• qualitative research