Research on myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), has developed in recent years; however, until now there has still been a gap in the literature regarding loneliness. This condition can have psychological effects on both children and adults diagnosed with the syndrome, as well as their caregivers, friends, and family members.
Of all patients diagnosed with CFS, 40% also suffer from psychosocial impairment. The types of these psychological effects and their level of severity day to day varies from individual to individual. However, researchers do see patterns across age groups.
For example, children often have to miss school for extended periods of time which itself can impede their social development, development of life skills, and ability to shape their own identity.
Family dynamics can also be impacted by a CFS diagnosis. Sibling rivalries, feelings of guilt, and strained relationships from the development of new family roles can all be difficult to navigate. Nonetheless, those who live alone also face their own challenges. They are plagued by a financial burden, feelings of decreased autonomy, stigmatism, and skepticism from those around them.
It is evident that all CFS patients can face loneliness and isolation from their disease. It is the initiation and the presentation of these feelings that vary.
How to Cope
Some strategies for coping with the psychological effects of this diagnosis are-
- Joining a support group (virtually or in person)
- Cognitive-Behavioral Therapy
- Peer Counseling
- Staying active in the outside world
For some, religion is a huge influence in coping. For many, simple conversations with their healthcare provider discussing coping mechanisms can make a huge difference.
Future research should focus on how the duration of symptoms influences loneliness, how personality traits influence experiences of loneliness, and how those of various cultures cope differently with the condition. This will allow us to better support the unique needs of different individuals with the syndrome.
Overall, it appears that connecting with individuals who have the same symptoms as you, who understands your stress, loneliness, emotions, and pain, can help alleviate feelings of loneliness.
It is important that medical providers, family members, and the friends of patients facing this diagnosis continue to investigate how else to support the unique needs of those they care for.
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