There but not really involved: The meanings of loneliness for people with chronic illness

Abstract

Loneliness is one of the most pressing and rapidly growing contemporary social challenges around the world. Yet we still lack a good understanding of how loneliness is constituted and experienced by those most affected. We conducted semi-structured interviews with 40 people with chronic illness who were experiencing loneliness to explore what loneliness means to them and how it impacts in their daily lives. Drawing on ideas around liquidity and performativity, we identified the relational, temporal and social layers of loneliness. Our analysis revealed the interconnectedness of chronic illness and loneliness in participants' daily lives, as well as how chronic illness shifts temporal orientation, and transforms interpersonal relationships and relationship with self, contributing to the experiences of loneliness. Though participants described the many social conditions that restricted their opportunities for social participation, giving them a sense of being left behind and spectating the social life of others, a rhetoric of loneliness as a problem and responsibility of the individual was still prominent. A narrative of the need to perform social connection emerged in the absence of meaningful social bonds with others. We argue that normative ideals of wellness and positivity circulating in chronic illness communities and society more broadly are implicated in the experience of loneliness for people with chronic conditions. We conclude by considering how more expansive representations of how to live well with chronic illness may be important in reducing personal and collective loneliness.

Keywords: Chronic illness; Liquid modernity; Loneliness; Performativity; Qualitative research.