The lonely, isolating, and alienating implications of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome by Samir Boulazreg and Ami Rokach in Healthcare 2020, 8(4), 413; [doi.org/10.3390/healthcare8040413]
Review 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.
4.1. Summary
To reiterate, chronic illnesses that affect the central nervous system such as ME/CFS does produce psychosocial impairment in 40% of individuals [37]. Though this impairment varies from individual to individual, the age at which sufferers deal with the illness dictates broader and commonly reported themes. For example, adolescents plagued with this disorder miss significant amounts of schooling, which impedes social functioning and future career development skills and can lead to a loss of identity, all of which make young ME/CFS individuals question the meaning of life.
Additionally, a family who receives a diagnosis of ME/CFS for one of its members may experience disruptions of the family dynamic including sibling jealousies and rivalries, guilt, and, strained parent-child relationships resulting from parents and children needing to step into differing roles when assisting (e.g., a parent taking on the role of teacher when homeschooling or a child taking on the role of a parental figure when advising recommendations on what not to do). ME/CFS suffers who are single with no guardians and no dependents also have their own shares of concerns that they must deal with. This includes rumination and stress related to the financial impact of the disorder (e.g., the loss of work and the cost of treatment), fear about being unable to live a normal life and start a family, and decreased autonomy and an increase in reliance on a caregiver. Furthermore, the stigmatization of this illness results in dismissiveness and skepticism from peers, from authority figures (e.g., teachers and employers), and sometimes even from family members.
Concerning loneliness, the main focus of this article, we have provided a brief explanation of what loneliness is, how it may result in distress, unhealthy coping behaviors, and how it relates to chronic illness. In doing so, we have highlighted Leventhal et al.’s [78] study, which showed how one’s conceptualization of illness—e.g., the labeling of the illness and the perception of it, control over how one feels about it, expected consequences, and level of hopefulness—can greatly aid or vastly worsen one’s experience with their illness.
Several coping strategies that caregivers and sufferers of ME/CFS may benefit from were also mentioned, including empathetic behaviors, the attempt to stay in touch with the outside world, peer counseling, support groups, solitude, and the cognitive-behavior approach to how to think about the illness. Additionally, we emphasized the important role healthcare professionals can have with their patients and spoke about the power of spirituality and religiousness as a buffer to ME/CFS-induced loneliness.
4.2. Future Directions
As we previously mentioned at the beginning of this article, there is a lack of investigation surrounding loneliness and how it affects individuals with ME/CFS. As such, we would like to raise some questions that would be of interest and offer insights into conducting research studies with this population.
Questions that glaringly present themselves are: can adequately managed and prolonged exposure to social support networks mitigate symptoms of pain in ME/CFS patients? Additionally, would being in a support group amongst other ME/CFS individuals offer the same buffers to loneliness non-ME/CFS groups? Might these effects be observable via online support groups (e.g., Zoom, Skype, etc.) and would they produce similar outcomes as in-person groups?
The length of illness and how it relates to loneliness are also of interest. For example, since ME/CFS symptoms are present for a minimum of six months and up to, in some cases, more than two years [21], a longitudinal study that tracks loneliness and how one perceives their diagnosis of ME/CFS (including pain, irritability, feelings of control) would be of great interest and could afford insight on whether or not lesser amounts of loneliness translate to a shorter length of pronounced distress faced by the illness.
A specific look at personality traits, such as extraversion and introversion, and questionnaires related to perceptions of joy derived from outings, past job experiences/hobby enjoyment (e.g., Quality of Life Enjoyment and Satisfaction Questionnaire [125], The Minnesota Satisfaction Questionnaire [126], etc.) should also be noted and looked at for further perspectives on illness perception. For example, Davey et al. [122] found that individuals who ranked higher on openness to experience were more accepting of their own inner experiences dealing with chronic illness, resulting in significantly lower pain perception.
Additionally, while difficult, it would be fruitful to sample a comprehensive sample that includes many different cultures and/or backgrounds. Since different cultures are affected and tend to view loneliness differently [127,128,129], it would be interesting to observe if and how these cultural differences fare with respect to coping with ME/CFS. Answers to these questions would undoubtedly result in better treatment protocols and healthcare expectations.
5. Conclusions
Considering that loneliness, its accompanying stigma, and illness conceptualization have a devastating impact in exacerbating chronic illness, we deem the current lack of investigation between loneliness and ME/CFS a major omission in the ME/CFS literature. In closing, we wish to end this article on a quote from Williams-Wilson [10], a researcher who suffers from ME/CFS herself and who investigated the qualitative experiences of adolescents with ME/CFS; drawing from one of the emergent themes of her study, and her personal experiences, she remarked, “finding other people in the same situation as you, with the same struggles and daily trials makes one feel less alone and different from the rest of the world; it provides a sense of affinity and justification and helps alleviate feelings of isolation and loneliness.” (p. 317).
It is thus a healthcare imperative that we take the necessary steps to study and demystify the illness’ alienating and isolating aspects so that those suffering with ME/CFS can feel empowered and compassion from the medical community when dealing with the disorder. Future research may explore the assistance that others, family members, friends, and the community at large can offer those who are struggling with ME/CFS loneliness-related stress and emotional pain.
