Compelled loneliness and necessitated social isolation:
“It’s like being on the other side of a mirror, just looking in”
Natalie Wotherspoon interviewed 42 people with ME and found that loneliness can be an integral part of living with ME. She found 2 contriubutions to that:
- 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:
- spatial and temporal restrictedness
- communicative alienation and
- discreditation.
The article highlights how health challenges can impact on loneliness and how the stigma of contested illness exacerbates loneliness, and… how it can be difficult to break a loneliness cycle when people have prolonged health challenges that can prevent them from acting upon loneliness.
CONCLUSION
This study contributes to understanding how loneliness and social isolation are experienced by people who have been diagnosed with ME, and potentially other contested conditions.
The stigmatisation of ME and loneliness can result in the needs of people with ME being overlooked and marginalised. Interventions that aim to support ME patients experiencing loneliness need to consider incorporating individual’s social needs and their health challenges.
Promoting meaningful and empathetic relationships should be prioritised over increasing social connections.
MERUK: Loneliness and social isolation in ME/CFS
Although not discussed in detail in the research paper, ME Research UK notes that interventions which aim to reduce loneliness – not specific to those with ME/CFS – are often targeted at older adults, or involve an element of physical activity. While web- and phone-based interventions have been developed, and are in theory more accessible, these still require energy, and may lead to post-exertional malaise. In addition, the stigma and misunderstanding faced by those with ME/CFS may act as a barrier to participation in interventions that are not specific to the disease.
Knowing more about how the experiences of people with ME/CFS relate to loneliness may help researchers identify areas for intervention, which are both more accessible and place less responsibility on the person with the disease to make changes.
