There but not really involved: The meanings of loneliness for people with chronic illness, 2024, Lewis

[Dolphin]

https://www.sciencedirect.com/science/article/pii/S0277953624000406

Social Science & Medicine
Volume 343, February 2024, 116596
There but not really involved: The meanings of loneliness for people with chronic illness

Author links open overlay panel, , , , , ,
https://doi.org/10.1016/j.socscimed.2024.116596

Open access

Highlights

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  Explores how loneliness is constituted by those with chronic illness.
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  Findings reveal the relational, temporal and social layers of loneliness.
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  Chronic illness and loneliness are interconnected in participants' daily lives.
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  Rhetoric of loneliness as responsibility of the individual remains prominent.
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  More expansive representations of living well with chronic illness are needed.

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.

 

[Dolphin]

Blog post that followed this paper:

The Link Between Loneliness and Chronic Illness
A recent study explores the intersection between loneliness and chronic illness.

https://www.psychologytoday.com/ie/...e-link-between-loneliness-and-chronic-illness

https://twitter.com/user/status/1912648837895770581

 

[Hutan]

Lots that is interesting in this paper. Not something to read when you are feeling vulnerable though, I think.

I felt lonely because I wasn’t putting myself out there and making an effort. I wasn’t finding the right social group. And that was my own fault and I should have just pulled my finger out and called some people up and planned something and stopped sitting back and waiting for someone else to do it for me. (Tammy age 48, multiple sclerosis)

At the same time, what appears to be unresolved in Tammy's narrative is that "forcing yourself" to socialise can amplify rather than remedy one's loneliness:
… not really wanted to be there and not really felt like I connected, that’s far more palpably isolating [than sitting at home]. […] forcing yourself to do it when you’re not right, it actually makes it far worse. (Tammy age 48, multiple sclerosis)

Participants like Elizabeth were highly critical of discourse that located loneliness as a problem and responsibility of the individual. She argued that this was victim-blaming as it oversimplified a complex social problem that was mostly outside of one's personal control:
I think there’s been a lot of this finding yourself positivity around you shouldn’t feel lonely if you’ve found yourself. But I just think, yeah, there’s a lot of expectation of people to not be lonely and just to cope and that they should be able to cope. But I don’t think it’s that simple at all. (Elizabeth age 31, chronic bowel condition)

The fluctuations of chronic illness meant that self- and social-identities were continuously in flux, with participants feeling caught between communities of illness/disability and wellness.

If we are to accept Bauman's (2000) claims that liquid modernity is characterised by fragility of social bonds, then continual performativity is required in order to be social and meet the ideals of relationships, with little regard given to the constraints that people with chronic illness experience in doing so. Those who will not (or cannot) perform the roles that are demanded of them by society, are left on the sidelines.

Although we know that responding to loneliness requires a social approach, it is still primarily treated as an individual problem in discourse and interventions. We find that locating loneliness (and its solutions) within the individual is problematic (Malli et al., 2023). Despite the dominance of an individualistic rhetoric, our findings emphasise the value of relational approaches to loneliness, whereby attention is given to the importance of recognition, visibility and value in the lives of others.