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

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  • Collette Sosnowy

    (The Graduate Center of the City University of New York, 365 Fifth Avenue, New York, NY 10016, USA)

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.

Suggested Citation

  • Collette Sosnowy, 2014. "Practicing Patienthood Online: Social Media, Chronic Illness, and Lay Expertise," Societies, MDPI, vol. 4(2), pages 1-14, June.
    • Handle: RePEc:gam:jsoctx:v:4:y:2014:i:2:p:316-329:d:37075
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    References listed on IDEAS

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    1. Miller, E.A. & Pole, A., 2010. "Diagnosis blog: Checking up on health blogs in the blogosphere," American Journal of Public Health, American Public Health Association, vol. 100(8), pages 1514-1519.
    2. Rothman, S.M. & Raveis, V.H. & Friedman, A. & Rothman, D.J., 2011. "Health advocacy organizations and the pharmaceutical industry: an analysis of disclosure practices," American Journal of Public Health, American Public Health Association, vol. 101(4), pages 602-609.
    3. Ziebland, Sue, 2004. "The importance of being expert: the quest for cancer information on the Internet," Social Science & Medicine, Elsevier, vol. 59(9), pages 1783-1793, November.
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    Cited by:

    1. Groenevelt, I.P.(Irene) & de Boer, M.L.(Marjolein), 2023. "Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses," Social Science & Medicine, Elsevier, vol. 327(C).
    2. Deborah Lupton, 2014. "Apps as Artefacts: Towards a Critical Perspective on Mobile Health and Medical Apps," Societies, MDPI, vol. 4(4), pages 1-17, October.
    3. Petersen, Alan & Schermuly, Allegra & Anderson, Alison, 2022. "‘A platform for goodness, not for badness’: The heuristics of hope in patients' evaluations of online health information," Social Science & Medicine, Elsevier, vol. 306(C).

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