Cheung, Melissa Mei Yin ORCID: 0000-0001-7598-8648, Lewis, Sophie ORCID: 0000-0003-4639-217X, Raja, Revati, Willis, Karen ORCID: 0000-0001-8036-8814, Dubbin, Leslie ORCID: 0000-0002-7044-5799, Rogers, Anne ORCID: 0000-0002-7231-790X, Moensted, Maja Lindegaard ORCID: 0000-0002-8708-1039 and Smith, Lorraine ORCID: 0000-0002-3499-1514 (2024) Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness. Qualitative Health Research. ISSN 1049-7323

Abstract

Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual’s problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.

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