Coping With Uncertainty: Going Where the Flow of Your Chronic Illness Takes You

Spring lends itself to new beginnings, from planning spring cleaning to starting up projects, to contemplating healthier choices.

When you live with chronic pain, it’s easy to decide on a new initiative, but difficult to actually accomplish it. The unpredictable and overwhelming nature of fibromyalgia and chronic illness symptoms mean that completing something isn’t only a matter of motivation and effort. Unfortunately, illness takes away much of our control over our own lives. This leads to feeling powerless, which is hard to live with. You have to go with the flow of your illness, wherever it takes you.

It can help to take a long view of the uncertainty of life. As they say, “humans plan, and God laughs.” All people have to contend with the fact that they cannot control the future. This truth may be more visible in the lives of people with chronic illness, but it applies to everyone. Striving and straining to attain the impossible — control of the future– can be an exhausting and defeating waste of mental and emotional effort.

I recently developed mysterious knee pain, and my knee becomes red and swollen sometimes. This has significantly limited my ability to walk and drive and do basic daily activities. While I wait on multiple referrals to specialists, I have to live without knowing whether I will have to permanently live with this new disability. Unknowns like this are scary and naturally produce worry and anxiety. At times like this, I come back to the Serenity Prayer: “grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Beyond containing a universal truth, I think that this prayer offers a blueprint for coping with life’s fundamental unpredictability.

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During a period of heightened uncertainty, it’s useful to mentally review the worries that arise, and divide them into two categories: things you can change, and things you can’t control. For the first category, put the analytical, problem-solving part of your brain to work on coming up with strategies and to-do lists. In the case of my knee, that has included day-to-day coping strategies to make myself more comfortable. For example, I bought a chair for the shower to make washing easier. I looked up ways to make at-home ice packs using water and rubbing alcohol in Ziploc bags so that I can ice my leg frequently to keep the swelling down. I’ve been keeping careful track of my daily steps so that I don’t go beyond what I can handle. While these proactive steps don’t address the fundamental question about what will happen in the future, they do make me feel more in control of the present. It isn’t easy to do something that makes me feel more disabled than a month ago, like sitting in the shower, but I’m doing what I can, and that feels much better than doing nothing.

So what about the second category — the things we cannot change? Sometimes the simple act of acknowledging that there are things beyond our control can be a relief. When worry and apprehension take over your mental attention, they’re often based on the assumption that you have the ability to change external circumstances. Setting that burden down can be freeing. Of course, this doesn’t mean that you stop caring about outcomes. It’s a fallacy to say that choosing to live in the present without always being preoccupied with future worries means that you don’t care about what will happen.

Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms. My Grandmother used to say that “we’ll cross that bridge when we get there.” The older I get, the more I realize the wisdom of that saying. As mindfulness practitioners like to remind us, we only ever live in the present moment, not in the future, or the past. The visual of a mountain, sitting still and unmoveable in the face of all-weather and seasons, is sometimes used in meditation because it captures the spirit of being grounded in the present. There are different practices that can help us to cultivate equanimity in the face of uncertainty, such as mindfulness, cognitive behavioral therapy, or prayer. The gist of these comes down to being self-aware about what we mentally focus on, and deciding whether the issue is something we can change or something we cannot control. We need to do what we can to address the things within our power, and let go or surrender what we cannot (over and over again, sometimes). In the long term, I don’t know what will happen regarding my knee. Right now, I think I will go get another ice pack and start thinking about what to make for dinner.