Relationships and Chronic Illness

Source: Katie Willard-Virant

Social workers analyze issues by looking at three levels of a person’s relationships and connections. The micro level explores a person’s relationship with herself: her beliefs and feelings about herself. The mezzo level comprises a person’s immediate environment, notably family and friends. The macro level encompasses the larger society and includes governmental, economic, and cultural policies and values.

I had the pleasure of speaking with the Lung Transplant Foundation last week on the issue of relationships and chronic illness. I used the micro-mezzo-macro approach to organize my talk and outline the salient points below.

Chronic Illness Barriers to Relationships

Loneliness is an “unpleasant experience that occurs when a person’s network of social relationships is deficient either qualitatively or quantitatively (Bekhet & Zauszniewski, 2008).” When we are not getting enough connection, we feel lonely. This feeling of loneliness is a warning sign alerting us to our unmet need for connection.

Chronic illness interrupts connection by removing opportunities for interactions. This narrowing of opportunity occurs at the micro, mezzo, and macro levels.

Micro Level: The beliefs we hold about ourselves affect our relationships. Many people who live with chronic illness carry a feeling of shame about their illness, believing that their illness makes them unlovable. They feel as if their symptoms make them too needy and devoid of the necessary resources to be good partners, parents, and friends. This belief–often unarticulated–causes people to avoid connection or to “mask” their illness, hiding from friends and family the extent to which their illness affects their daily lives.

Mezzo Level: Our interpersonal relationships with family members and friends also are affected by chronic illness. Many people living with chronic illness are familiar with close connections disappearing or making insensitive comments. We may feel despair that other people do not understand what it means to be chronically ill.

Indeed, many people (consciously and unconsciously) are frightened by the vulnerability that exists in being human. Our illness brings that vulnerability (and their anxiety) to the forefront, causing them to defend themselves against their painful feelings by distancing themselves from our experiences.

Macro Level: Relationships with the larger community are beneficial. Sitting in the park on a sunny day, going to a museum or the theater, eating at a restaurant—all of these activities put us in contact with other people. We may not know these people, but being in their presence reminds us that we are part of the larger fabric of communal life.

It can be difficult for chronically ill people to use public spaces. Our symptoms may make it hard to navigate crowds and high levels of stimulation. Additionally, COVID continues to make many people living with chronic illness wary about the safety of using public spaces. This use of public spaces is an important avenue for connection, and it is problematic that chronically ill people can’t easily avail themselves of these opportunities.

Addressing Chronic Illness Barriers to Relationships

At every level–micro, mezzo, macro–we can undertake interventions to mitigate chronic illness barriers to relationships. Changes at each level will reverberate, causing change at other levels. That is, “[b]ecause the micro-mezzo-macro levels are interrelated, there is a ripple effect when intervention takes place at one level in one particular area (Rogers, 2013).”

Micro Level: Healing shame about our illness is important in improving self-worth. Can we acknowledge the feeling of shame and how it makes us want to withdraw from others? Can we find grief instead? Shame tells us: “My illness makes me an unloveable person. How can I expect to have any friends?” Grief tells us: “I’m sad and angry that my illness prevents me from enjoying time with friends as I would like.” Grief helps us name our feelings and, as we mitigate shame, moves us toward rather than away from others. We believe we are worthy of connection.

Relationships Essential Reads

Why Are Friends With Benefits on the Rise?

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Mezzo Level: Improving relationships with family and friends requires honesty and trust from all parties. It also requires consciously letting go of guilt and blame for the illness. Living with illness is stressful both for the chronically ill person and her close connections. Often, the chronically ill person feels guilty for being sick, and her family members/friends feel guilty for not doing enough to comfort or care for her. Similarly, the chronically ill person may blame her family members/friends for letting her down; the family members/friends may blame the chronically ill person for not getting better.

If we reframe guilt and blame as unhelpful expressions of the stress we feel in the face of illness, we can better cope with the illness as a team. Instead of pointing fingers at each other and ourselves, we can ask, “How can we face the stress created by illness together? How can we understand and support each other? How can we be on the same team?”

Macro Level: Increasing our usage of public spaces is important in connecting us to community. We can identify what we need to make this usage feel more comfortable. Perhaps we need mobility aids or easy access to bathrooms. Perhaps, due to anxiety about COVID, we need to stick to outdoor spaces right now. Making a plan for what we need before we go out is anxiety-reducing. Reminding ourselves that we can leave if our discomfort becomes too much is an important self-care boundary.

Concluding Thoughts

We exist in webs of connection, as relationships with self, family, friends, and community influence one another. Move the lens in and out on these various levels of relationships. What is working for you? What could be better? Play with this process. Making even a small change at one level can benefit your entire relational system.