The Social Media Experiences of Long-term Patients: Illness, Identity, and Participation

  • 1 Department of Information Science and Media Studies, University of Bergen

Abstract

The present article investigates the meanings of social media use for long-term patients, focusing on a group of Norwegian bloggers diagnosed with myalgic encephalomyelitis (ME). This severe illness can confine patients to their homes for long periods of time, drastically reducing possibilities to participate on most social arenas and leaving Internet use as a rare opportunity for connection with the outside world. A qualitative analysis of interviews with ME bloggers investigates the meanings of social media use in this particular situation. Drawing on perspectives from research on patients’ Internet use, this phenomenon is analysed as management of identity narratives in the face of illness. However, the article further argues that the concept of participation provides a relevant supplementary perspective that highlights the societal and political relevance of these practices.

If the inline PDF is not rendering correctly, you can download the PDF file here.

  • Bjerkestrand, Stine (2012) ”Maktskiftet [Power Change]”. Tidsskrift for Den norske legeforening [The Journal of the Norwegian Medical Association] 24(2): 125-132.

  • Baym, Nancy (2010) Personal Connections in the Digital Age. Cambridge: Polity.

  • Boyd, Danah (2014) It’s Complicated. The social lives of networked teens. New Haven: Yale University Press.

  • Bury, Michael (1982) “Chronic Illness as biographical disruption”. Sociology of Health and Illness 4 (2): 167-182.

  • Carpentier, Nico, Dahlgren, Peter & Pasquali, Francesca (2013) “The Democratic (Media) Revolution: A Parallel Genealogy of Political and Media Participation”, pp. 123-41 in Carpentier, Nico, Schrøder, Kim & Hallett, Lawrie (eds.) Audience Transformations. Shifting Audience Positions in Late Modernity. New York: Routledge.

  • Carpentier, Nico & Dahlgren, Peter (2014) “Histories of media(ted) participation: An introduction”. CM: Communication Management Quarterly 30: 7-14.

  • Edwards, Catherine, Thompson, Andrew, & Blair, Alan (2007) “An ‘Overwhelming Illness’: Women’s experiences of Learning to Live with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis”. Journal of Health Psychology 12(2): 203-14.

  • Enjolras, Bernard, Karlsen, Rune, Steen-Johnsen, Kari & Dag Wollebæk (2013) Liker, liker ikke. Sosiale medier, samfunnsengasjement og offentlighet [Social media, societal engagement and public sphere]. Oslo: Cappelen Damm.

  • Enli, Gunn & Thumin, Nancy (2012) “Socializing and Self-Representation online: Exploring Facebook”. Observatorio (OBS*) 6(1): 87-105.

  • Frank, Arthur (1995) The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago Press.

  • Fuchs, Christian (2014) Social media: A critical introduction. London: Sage.

  • Gentikow, Barbara (2005) Hvordan utforsker man medieerfaringer? Kvalitativ metode [How to explore media experiences? Qualitative methods]Kristiansand: IJ-forlaget.

  • Giddens, Anthony (1991) Modernity and Self-Identity. Self and Society in the Late Modern Age. Cambridge: Polity.

  • Gray, Ann (2003) Research Practice for Cultural Studies. London: Sage.

  • Grue, Jan (2013) “A garden of forking paths: a discourse perspective on ‘myalgic encephalomyelitis’ and ‘chronic fatigue syndrome’.” Critical Discourse Studies, online publication.

  • Harrison, Katherine (2014) “Online negotiations of infertility: Knowledge production in (in)fertility blogs.” Convergence 20(3): 227-351.

  • Hatland Aksel, Kuhnle, Stein & Romøren, Tor (eds.) (2011) Den norske velferdsstaten [The Norwegian Welfare State]. Oslo: Gyldendal.

  • Held, David (1996) Models of Democracy. Cambridge: Polity.

  • Jackson, Ida (2010) Sosiale medier. Hvordan ta over verden uten å gå ut av huset [Social media. How to take over the world without leaving your house]. Oslo: Aschehoug.

  • Jelstad, Jørgen (2011) De bortgjemte - og hvordan ME ble vår tids mest omstridte sykdom [The hidden - and how ME became the most controversial disease of our time]. Oslo: Cappelen Damm.

  • Kivits, Joëlle (2009) ”Everyday health and the internet: a mediated health perspective on ’health information seeking”. Sociology of Health & Illness 31(5): 673-87.

  • Knudsen AK, Lervik LV, Harvey SB, Løvvik CMS, Omenås AN and Mykletun A (2012) ”Comparison of chronic fatigue syndrome/ myalgic encephalopathy with other disorders: an observational study”. JRSM Short Reports 3:32.

  • Loader, Brian D. & Dan Mercea (eds.) (2012) Social Media and Democracy. Innovations in participatory politics. London: Routledge.

  • Lövheim, Mia (2011) “Personal and Popular. The Case of Young Swedish Female Top- bloggers”, Nordicom Review 32(1): 3-16.

  • Mager, Anne (2009) “Mediated health: sociotechnical practices of providing and using online health information”. New Media & Society 11(7): 1123-1142.

  • Miller, Daniel (2011) Tales from Facebook. Cambridge: Polity Press.

  • Moe, Hallvard (2011) “Mapping the Norwegian Blogosphere: Methodological Challenges in Internationalizing Internet Research”. Social Science Computer Review 29(3): 313- 26.

  • Murero, Monica & Rice, Ronald (eds.) (2006) The Internet and Health Care. Theory, Research, Practice. New York: Routledge.

  • Nettleton, Sarah (2013) The Sociology of Health and Illness. Cambridge: Polity.

  • Nettleton Sarah, Burrows, Roger & O’Malley, Lisa (2005) “The mundane realities of the everyday lay use of the internet for health, and their consequences for media convergence”. Sociology of Health & Illness 27(7): 972-92.

  • Orgad, Shani (2005) Storytelling Online. Talking Breast Cancer on the Internet. New York: Peter Lang.

  • Orgad, Shani (2007) ”The Transformative Potential of Online Communication”, Feminist Media Studies 5(2): 141-161.

  • Pateman, Carole (1970) Participation and Democratic Theory. Cambridge: Cambridge University Press.

  • Rettberg, Jill (2014) Seeing Ourselves Through Technology. Basingstoke: Palgrave Macmillan.

  • Seale, Clive (2005) “New directions for critical internet health studies: representing cancer experience on the web”. Sociology of Health and Illness 27(4): 515-540.

  • Tjora, Aksel & Sandaune, Anne-Grete (2010) Digitale Pasienter [Digital Patients]. Oslo: Gyldendal.

  • Turkle, Sherry (1995) Life on the Screen. Identity in the Age of the Internet. New York: Simon & Schuster.

  • Westerby Catherine (2013) ”Pasientaktivist på sengekanten [Bedside Patient Activist]”, pp. 165-202 in Bjørkelo, Kristian (ed.) Gi meg en scene! Norsk blogghistorie [Give me a stage! Norwegian blog history]. Oslo: Humanist forlag.

  • Åsbring, Pia & Närvänen, Anna-Lisa (2002) Women’s Experiences of Stigma in Relation to Chronic Fatigue Syndrome and Fibromyaliga. Qualitative Health Research 12(2): 148-60.

OPEN ACCESS

Journal + Issues

Search