isolation – American ME and CFS Society

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

Abstract:

In this article, we present findings from a qualitative study examining how young women experience being long-term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long-term bedridden from the vantage point of being fully or partially recovered.

Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important.

Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone.

Based on our findings, we argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

Source: Krabbe, S. H., Bjorbækmo, W. S., Mengshoel, A. M., Sveen, U., & Groven, K. S. (2024). A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence. Nursing Inquiry, e12625. https://doi.org/10.1111/nin.12625 https://onlinelibrary.wiley.com/doi/10.1111/nin.12625 (Full text)

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

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.

Source: Wotherspoon, N. (2023). Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”. Sociology of Health & Illness, 1–18. https://doi.org/10.1111/1467-9566.13732 https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13732 (Full text)

‘Welcome to my world’: a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown

Abstract:

Objectives: We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society.

Methods and measures: Thirty semi-structured interviews were conducted in pwME/CFS between June – July, 2020. Responses were qualitatively analysed using an experiential, thematic framework.

Results: While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population’s limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample.

Conclusions: Our findings suggest that future work may fruitfully examine whether our participant’s predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

Source:Portch E, Moseley RL, Wignall L, Turner-Cobb JM, Taylor Z, Gondelle M. ‘Welcome to my world’: a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown. Psychol Health. 2023 May 31:1-18. doi: 10.1080/08870446.2023.2220009. Epub ahead of print. PMID: 37259524. https://pubmed.ncbi.nlm.nih.gov/37259524/

The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.

Source: Boulazreg S, Rokach A. The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2020 Oct 20;8(4):E413. doi: 10.3390/healthcare8040413. PMID: 33092097. https://pubmed.ncbi.nlm.nih.gov/33092097/

Mediating Relatedness for Adolescents with ME: Reducing Isolation through Minimal Interactions with a Robot Avatar

Abstract:

This paper discusses how a networked object in the form of a small robot designed to mediate experiences of care, social connectedness, and intimacy, was used by adolescents with Myalgic Encephalomyelitis, a condition that reduces their normal functioning, including the ability to socialize. A study with nine adolescents, each using the robot for about a year in average, revealed that it was largely effective at mediating their everyday experiences of relatedness, triggering productive new habits and social practices. We interpret these findings to propose a set of strategies for designing technologies that support relatedness while requiring minimal interactivity and engagement. Balance, extension-of-self, coolness, and acts-of-care, in addition to commonly used physicalness, expressivity and awareness, enable the robot to extend the adolescents’ ability to relate to others, people and animals.

Source: Proceedings of the 2019 on Designing Interactive Systems Conference. (DIS ’19), pp 359-371. Date: June 23-28, 2019 https://dl.acm.org/citation.cfm?id=3322319 (Full text available through PDF download)

Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study

Abstract:

OBJECTIVES: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to chronic fatigue syndrome/myalgic encephalomyelitis.

METHODS: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data.

RESULTS: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world.

CONCLUSIONS: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a ‘significant other’ perspective.

Source: Brooks J, King N, Wearden A. Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study. Chronic Illn. 2014 Mar;10(1):5-17. doi: 10.1177/1742395312474478. Epub 2013 Apr 12. https://www.ncbi.nlm.nih.gov/pubmed/23585635

Toward a model of social course in chronic illness: the example of chronic fatigue syndrome

Abstract:

Retrospective, narrative accounts of illness experience in chronic fatigue syndrome provide the empirical basis for a preliminary conceptual model of social course in chronic illness. Qualities of distress interact with culturally specific expectations for social life and personal conduct to trigger microsocial processes of marginalization: role constriction, delegitimation, impoverishment, and social isolation.

Marginalizing processes are opposed by acts of resistance initiated by ill individuals and directed toward integration in social worlds. Social distance from the perceived centers of CFS sufferers’ interpersonal worlds expands and contracts with the changing predominance of marginalizing and resisting influences over time. Social course thus consists of successive, bi-directional movements along a ‘continuum of marginality’ by persons living lives with chronic illness.

Source: Ware NC. Toward a model of social course in chronic illness: the example of chronic fatigue syndrome. Cult Med Psychiatry. 1999 Sep;23(3):303-31. http://www.ncbi.nlm.nih.gov/pubmed/10572737