The Importance of Hope in Chronic Illness

Source: Katie Willard Virant

We know from lived experience that our circumstances feel more positive when we possess hope. Research confirms that hope is associated with a better quality of life (Bright et al., 2011). Emily Dickinson wrote that “hope is the things with feathers that perches in the soul.” This post examines those feathers, attempting to explore hope’s many facets.

What is hope?

Merriam-Webster states that to hope is: “to want something to happen or be true and think that it could happen or be true.” A hope is not as certain as an expectation; neither is it as uncertain as a wish. Rather, it embraces a possibility that includes being prepared to accept that what is hoped for may not occur (Soundy et al., 2014).

Hope sits in the middle of the dialectic between despair and delusion. At one end of the continuum is despair, a belief that current circumstances will never change. At the other end is delusion, a belief that our circumstances will definitely change in the manner we wish for (being completely cured, for example). If we lean too far in either direction, we are in dangerous territory. If we despair, we believe all is finished and we have nothing to live for. If we delude ourselves that what we wish for is certain, we risk becoming shattered by disappointment and we also prevent ourselves from adapting to our situation (Wiles, Cott, & Gibson, 2008). If we hope, however, we maintain both an acceptance of our circumstances and also a belief in the possibility that real improvement can occur.

Ways of hoping

There are many things for which we can hope while living with chronic illness (Eaves, Nichter, & Ritenbaugh, 2016). We can have an illness-specific hope that symptoms will improve, perhaps by responding to new treatments. We can have transcendent hope that we will lead a good life in spite of our illness, perhaps focusing on the joy of relationships or work and leisure pursuits. We can have a utopian hope that our experience leads to a better future for everyone, both in the way our experience is contributing to medical knowledge and also in the way we use our lived experience of suffering to relate to others in pain.

Hope ebbs and flows over the course of our lives and our illness experience (Wiles, Cott, & Gibson, 2008). It is easier to hold hope in periods of relative remission and more difficult to hold hope in periods of disease activity. When we fall into despair or delusion, we can recognize those states as manifestations of emotional pain and try to ease ourselves back to the middle ground of hope. It’s important to note that we’re always moving up and down the continuum; neither despair nor delusion need be a permanent state.

Cultivating hope

Hope is a practice (Eaves, Nichter, & Ritenbaugh, 2016). That is, it’s something we need to develop and sustain. We cultivate hope through our relationships—with ourselves, our friends and family, and society as a whole (Leite et al, 2019).

In our relationship with self, it’s important to identify values and ways of being that have personal resonance. Perhaps, even when symptoms are present, we find that listening to music or sitting outside makes our day feel meaningful. When we find those pockets of joy, even during times of deep suffering, we are cultivating hope.

In our relationships with others, we can borrow hope from loved ones when our own is flickering. The ability of family members, friends, and medical professionals to see us as worthy people who are both deeply shaped by illness, and also more than our illness, can help us keep our own hope alive.

We also are affected by society at large. Unfortunately, there are ways that the larger culture does not offer hope to people living with chronic illness. It’s easy to feel “othered” and “less than” in a world that is designed for and run by able-bodied people. To cultivate hope, it’s important to find ways to reject these messages. Joining chronic illness advocacy and support groups can create a powerful sense of belonging and legitimacy. These groups, in recognizing and speaking out against bias toward chronically ill people, offer an important antidote to harmful cultural messages. They are hope-builders.

Hope as a dynamic force

“Paradoxically, hope is on intimate terms with despair. It asks for more than life promises.” (Mattingly, 2010, quoted in Eaves, Nitcher, & Ritenbaugh, 2016). When we hope, we open ourselves to potential disappointment. We may not get the things for which we hope. New treatment may not improve our symptoms; our illness may prevent us from reaching cherished goals; there may be periods of time when we feel devastated by the losses we bear. To truly hope is to acknowledge that crushing disappointment is a possibility. To cultivate hope, we have to believe that, should disappointment come, we will not be destroyed by it. Rather, we’ll feel the pain it brings, regroup, and hope for other things.

Questions for reflection

Where are you today on the hope continuum?
How do you cultivate hope as a practice?
Think of a time when you have felt hopeless. How did you move back into a state of hope?