The social media experiences of long-term patients: Illness,identity,and participation

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.