Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in” 2023 Wotherspoon

Abstract

This 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.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13732

 

I read the whole paper. It describes the effect of ME on my social life very accurately, and I feel comforted that other people are going through the same thing as me, and I feel heard because it's published in the sociological literature.

 

Looks like a useful paper. I think loneliness is an often overlooked but severe consequence of having ME.

The authors proposes two novel conceptual contributions to the study of loneliness: necessitated social isolation (due to symptoms of ME) and compelled loneliness (due to stigma of ME). She explains:

"Necessitated social isolation was not always accompanied with wanting to be alone, but it was often necessary when living with the symptoms with ME. Time and space became increasingly restricted for the participants as the illness worsened. Loneliness frequently followed and overlapped with the unwanted but necessary social isolation frequently needed to live with the symptoms of ME. The need to socially withdraw and pace are examples of crip time when the participants lived their lives by their needs.

[...]

The second novel concept, compelled loneliness, attempts to capture how stigma contributes to loneliness. The participants were induced into loneliness through social withdrawal and social rejection attributed to the stigma of living with ME."​

 

Some quotes from patients being interviewed:

"I can’t really deal with that…one by one friends disappeared

I’ve also become a bit of a recluse because I find socialising very exhausting and it’s cut me off a lot from friends and family…I couldn’t be any more different to the person I was before really. Extremely bubbly and now being like a recluse.

A normal life has been taken from me. It’s like being on the other side of a mirror, just looking in.

I just don’t know what to say. I just don’t have the conversation and you don’t live in the normal world anymore. You’re not going out there and doing a job and that sort of having interesting stimulation, keeping up with things. And sometimes you know I think, what am I going to say? I’ve never been like that, I’m a talker, it drives me mad.

People would visit me and I’d feel incredibly guilty about people with you know doing things in their lives that I’d missed out on that I’d missed out on stages in their life. I was quite envious of people.

Well the family were not convinced of what I had again they didn’t believe in ME it was a fake illness. Y’know that kind of stuff. [...] friends I had at the time slowly disappeared. They used to visit me and they slowly disappeared but life goes on I suppose.

a lot of them have disappeared really my friends because they can’t understand why I can’t always see them and they take it personally…So there’s not one relationship that the ME hasn’t affected which is why I’m quite a recluse."​

 

ME Research UK

A recent article finds that social isolation is often an unavoidable consequence of living with ME.

Read more here:
https://www.meresearch.org.uk/loneliness-and-social-isolation-in-me-cfs/