- Loneliness is a painful experience that can affect health negatively.
- Chronic illness can exacerbate loneliness by interrupting connection.
- Ameliorating loneliness should be part of any chronic illness treatment plan.
Loneliness hurts. We humans are wired to survive and thrive in community. When we feel disconnected from others, we ache. This ache is our psyche’s warning that all is not well and we need to find our way back into connection.
Loneliness has been much discussed during this time of the global pandemic. Interruptions to work, school, and social life meant that people couldn't maintain their usual forms of connectedness to others and to the world at large. For many people with chronic illnesses, these interruptions were not new. Paradoxically, many of us felt less lonely during the pandemic, as our experience of disconnection was being named and validated. We weren’t the minority during the pandemic—we were in the mainstream.
As the dangers of COVID-19 recede and people resume their regular connections, those of us living with chronic illness know that disease will continue to interrupt our relationships, leaving us vulnerable to loneliness. This post seeks to explore the loneliness associated with chronic illness and offer strategies for mitigation.
What Is Loneliness?
Researchers define loneliness as an “unpleasant experience that occurs when a person’s network of social relationships is deficient either qualitatively or quantitatively (Bekhet & Zauszniewski, 2008).” A qualitative deficiency in social relationships occurs when intimacy is lacking. That is, while one may have interactions with people, the interactions do not provide a sense of closeness. A quantitative deficiency refers to a lack of any social interactions, superficial or intimate. So loneliness has both an objective component (the number of social interactions one has) and a subjective component (the quality of depth in social interactions).
Loneliness predicts increased depression (Kool & Geenen, 2011). Loneliness also perpetuates itself, as the brain of a lonely person changes to view the world as more threatening. Thus, lonely people expect and remember more negative social interactions (Kool & Geenen, 2011).
How Chronic Illness Leads to Loneliness
Chronic illness interrupts connection by removing opportunities for interaction (Rokach, Lechier-Kimel, & Safarov, 2006). Symptoms and treatment often require withdrawal from the world at large. Pain and fatigue cause chronically ill people to miss out on school, work, and social life—all areas where connection is made and built upon (Macdonald et al., 2018).
Even when people with chronic illness are feeling relatively well, opportunities are foreclosed. The way that our societal structures and education work is not compatible with the unpredictability and uncertainty of chronic disease. Many people with chronic illness who do manage to work or go to school find that social life is non-existent due to the demands placed upon their bodies. “I can go to school and have this illness,” one young person told me. “I can’t go to school, have this illness, and have enough energy left over to do anything else.”
Other aspects of chronic illness also interrupt connection. The fear of other people observing one’s symptoms can lead to self-isolation (Carter, Qualter, & Dix, 2015). “What if I am in public and I have to go to the bathroom?” “What if I have a seizure in front of people?” “What if I lose mobility when I’m with my friends?” “What if I’m with people and I start struggling to breathe?” These are common anxious thoughts for people living with chronic illness, leading them to forego opportunities to connect.
The fear of being found disappointing is another powerful motivator to self-isolate. “I can’t move quickly, so I shouldn’t go with my friends because I’d just hold everyone back.” “I’m not very fun because my illness makes me tired and cranky—nobody wants to be around a Debbie Downer.”
Of note, too, is that illness perception—how one views their illness—is affected negatively by loneliness (Tuncay, Fertelli, & Mollaoglu, 2018). The higher the loneliness level, the more negatively the illness is perceived. This is important, as negative illness perception affects mental health and the ability to cope with illness (Tuncay, Fertelli, & Mollaoglu, 2018).
The first step to changing loneliness is to acknowledge that one is lonely. Sometimes, identifying loneliness as an issue is tricky. People with chronic illness may feel that their problem is their illness rather than the loneliness that it creates. They think if they can’t fix the illness, then they can’t fix the loneliness. This is not true. It may well be more challenging to ameliorate loneliness when one is living with illness, but it is not impossible. And it’s very likely that ameliorating loneliness will improve illness perception and overall quality of life.
Loneliness tells us that we’ve moved out of connection in a way that is not good for us. The antidote is to move back into contact with people. If you’re feeling lonely, think about how to increase both the quantity and quality of your interactions.
Regarding the quantity of interactions, how many people do you encounter in a day? What is the nature of those encounters? Something as small as a smile and a “thank you” to your postal carrier counts as an interaction. Try to increase these micro-moments of connection by getting out of the house or—if that’s impossible—getting online.
Regarding the quality of interactions, who are the people with whom you can be vulnerable and close? Can you strengthen those connections with meaningful conversation and experiences? Can you be open about your loneliness and your wish to deepen relationships?
You may believe that you cannot do this, that your illness makes it impossible for you to build and maintain connection. Some of this may feel shame-based (“I am too deficient for anyone to want to connect with me”) and some may feel fear-based (“People are going to hurt me”). You’ll need support in understanding and changing this, and therapy is exactly the place to do this work.
Connection is a vital part of any treatment plan for chronic illness. If you’re not getting enough of it and you don’t see a way to change that, it’s time to ask for help. You are worthy and wanted. Therapy can help you come back into community, decrease loneliness, and improve your quality of life.
Bekhet, A.K. & Zauszniewski, J.A. (2008). Loneliness: a concept analysis. Nursing Forum, 43(4): 207-213.
Carter, B., Qualter, P, & Dix, J.A. (2015). Social relationships, loneliness and adolescence: the potential for disruption by chronic illness. Journal of Child Health Care, 19(4): 421-422.
Kool, M.B. & Geenen, R. (2011). Loneliness in patients with rheumatic diseases: the significance of invalidation and lack of social support. The Journal of Psychology: Interdisciplinary and Applied, 146(1-2): 229-241.
Macdonald, S.L., Deacon, L., Nixon, J., Akintola, A., Gillingham, A., Kent, J., Ellis, G., Mathews, D., Ismail, A., Sullivan, S., Dore, S., & Highmore, L. (2018). The invisible enemy: disability, loneliness and isolation. Disability and Society, DOI: 10.1080/09687599.2018.1476224.
Rokach, A., Lechcier-Kimel, R. & Safarov, A. (2006). Loneliness of people with physical disabilities. Social Behavior and Personality, 34(6): 681-700.
Tuncay, F.O., Fertelli, T.K., & Mollaoglu, M. (2018). Effects of loneliness on illness perception in persons with a chronic disease. Journal of Clinical Nursing, 27(7-8): 1494-1500.