Rethinking Chronic Illness Limitations

Source: Katie Willard Virant

There are a lot of “can’t”s associated with chronic illness. While some “can’t”s certainly are set in stone, others are imposed by our own presupposition that illness bars us from various experiences.

It’s true that illness makes many experiences more challenging. People living with chronic illness—most of whom have energy deficits—need an extraordinary amount of energy to navigate a world not designed for them. It is exhausting, frustrating, and often discouraging. But it’s not an outright prohibition. So why do we so often default to “I can’t”? What are the costs of doing so? And how might we reframe “I can’t” to “I will find a way”?

Experiential Avoidance

Many of us who live with chronic illness grow accustomed to modifying our lives in order to take care of our health. This is a positive adaptation. But we get so used to adapting—to foregoing experiences—that it can become our default position. This allows us to sidestep feelings about our illness. If we automatically say, “I can’t,” then we don’t have to think about what we want, how badly we want it, and how disappointed we will be if we cannot have it. This avoidance of feelings—and of the situations that evoke them—is called “experiential avoidance” (Trindade, Ferreira, & Pinto-Gouveia, 2015).

The Costs of Experiential Avoidance

Perhaps you’re thinking that experiential avoidance makes a lot of sense. Who wouldn't want to avoid the painful feelings associated with chronic illness? While it may sound great to avoid emotional pain, significant costs are associated with this avoidance (Hildebrandt & Hayes, 2012).

A life spent avoiding pain is a narrow, fearful life. In living this way, we cease to believe that we have choices and power. We cut ourselves off from the world and from our own desires, believing that we are helpless victims of fate.

Experiential avoidance also limits our ability to learn what is important to us. If everything is a flat “no,” we never get to discover the things that matter so much to us that we’re willing to experience discomfort in order to achieve them. We never get to discover ourselves.

Transforming Avoidance Into Engagement

Take a hard look at your automatic “no” stances. Some will make sense to you. Others may cause a twinge of wistfulness, a quick burst of longing. Keep those in mind as you do the following:

• Identify what is important to you. For one person, seeing the Grand Canyon may feel extraordinarily important; for another, attending a particular academic program may be her ultimate dream. On a smaller (but no less important) scale, one individual may want to increase stamina and strength by beginning an exercise program; another may want to make and keep more friends.
• Face the reality of your circumstances. Being clear-eyed about the challenges we face is essential. Many things that we want to attain are going to be more difficult because we live with chronic illness. We’re going to have to acknowledge this and feel the emotions associated with this.
• Give up perfection. We likely will not get exactly what we want. Can we give up the fantasy of being an able-bodied person achieving our goals, and accept the reality of being a chronically ill person achieving our goals?
• Be creative and flexible. Perhaps you will not run that marathon. Can you run down the street? Maybe the degree program you long for is not doable. Can you take an online class in the subject that would feed your mind? Of course, it’s not the same, but it’s something. And something is better than nothing.

How can you take one step to expand your horizons today? To quote poet Mary Oliver, “What is it you plan to do with your one wild and precious life?"