Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”

Abstract

AbstractThis article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME). While illness experience is a central concern of the sociology of health and illness, experiences of loneliness alongside contested and chronic illness have received less attention. The analysis illustrates how loneliness can be an integral part of living with ME and offers two novel conceptual contributions ‐ necessitated social isolation and compelled loneliness. Necessitated social isolation concerns how ME symptoms can make social lives increasingly restricted. Compelled loneliness highlights how the combined experiences of both stigma and contested illness can lead to social withdrawal and rejection, which create a sense of loneliness. The article argues that loneliness and social isolation can be conceptually distinct yet recursive and overlapping. With the worsening of ME, the participants experienced a cycle of loneliness, in which social isolation and loneliness reproduced each other. Three key themes draw attention to how loneliness is affected by the situational aspects of living with a chronic and contested illness: (1.) spatial and temporal restrictedness (2.) communicative alienation and (3.) discreditation. The article highlights how health challenges can impact on loneliness and how the stigma of contested illness exacerbates loneliness.