Acceptance and Chronic Illness

Source: Elizabeth Flaherty

Acceptance of illness has a protective role in health outcomes for people living with chronic illness (Casier et al., 2011). Illness acceptance is linked to decreased anxiety and depression, increased emotional, social and physical well-being, and even better day-to-day mood levels (Casier et al., 2011). This month’s column explores the notion of illness acceptance: What is it? How do we cultivate it? And what do we do when we just can't seem to get there?

Acceptance of chronic illness: A definition

Acceptance encompasses a recognition of the limitations imposed by chronic illness and the adaptations necessary to meet the challenges created by those limitations (Casier et al., 2011). Researchers have identified four key attributes of acceptance of chronic illness (Zheng et al., 2019).

First, the person living with illness must have a clear understanding of her illness. What is happening to her body? What are the symptoms she lives with? What are factors that cause her symptoms to flare? What are factors that relieve symptoms?

Second, the person living with illness must have a realistic appraisal of her ability to overcome limitations. She must be able to anticipate and accommodate how her goals in living will be affected by illness. For example, there may be jobs out of bounds to her due to illness. She will need to grieve this loss and also accept the responsibility of finding an occupation that will be compatible with her circumstances.

Third, the individual living with illness must normalize her illness in a way that enables her to keep connection with others. That is, acceptance encompasses the recognition that illness need not cast a person out of the human race. The belief that one is more than one’s illness is essential for normalization; as is the belief that suffering (in many forms, including illness) is universal.

Finally, the person living with illness must take responsibility for her care. She must understand that decisions she makes about her illness will have ramifications for her health status.

Acceptance does not equal endorsement

Acceptance sounds very simple: One just has to accept reality. However, accepting reality is painful when we wish deeply that our circumstances were different. When someone we love dies, for example, we do not want that reality to be true. Even when we understand that our loved one is really gone, we protest the loss. Similarly, when parts of our old identity die due to illness limitations, we strongly would prefer that it be different. Acceptance does not mean we have to like the changes illness causes. In fact, true acceptance means accepting ALL parts of our experience - including our anger and grief.

Acceptance is not a linear process

Acceptance is not a state that, once reached, remains entrenched. Rather, it ebbs and flows throughout life (Telford et al., 2006). Illness progression or flares and new disappointments that arise due to illness tend to destabilize acceptance and require a working through of the changed circumstances. We go through many cycles of destabilization and acceptance. This process is the natural rhythm of living with chronic illness.

Acceptance is hard-won

We are afraid of what we believe we cannot bear. Chronic illness is a series of “ruptures of meaning (Delmar, 2005).” As we grieve those ruptures, we try to create new meaning - a new way of making sense of our life with illness. We are not as afraid of the losses as we are of our inability to cope with the losses. We are afraid of feeling utterly hopeless and lost; we are afraid we will never again find meaning in life.

Acceptance involves looking at reality - including the reality that we can find a way through loss. “How will I live with this?” begins as a cry of despair that turns into a real question to which we develop answers. All of this - the despair, the anger, the chiseling one’s way into new meaning - is part of the acceptance process.

Nobel Prize winning poet Louise Gluck wrote the following to a writer friend struggling with writer's block: "The periods of blankness and silence are desolating. But tell yourself the well is filling up (it is). At the end of a bad period or a silence, something will have shifted, your work changed. I believe this passionately. I think everything good in my own work I owe to endurance."

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Acceptance is not just the moments when things come together. It's also the bleak spaces between those moments when we're struggling to believe that life with illness can be meaningful. Echoing Louise Gluck, acceptance is endurance.

Take a moment to reflect on where you are in the acceptance cycle at this moment. Recognize it as a moment in time. If it is a good moment in time, savor it and let yourself feel the positivity of this moment. If it's a bleak moment in time, comfort yourself as you endure.