If only our lives were more predictable and certain, we’d feel a greater sense of security and safety. Yet, much of what happens to us is beyond our ability to control. This is because everything is constantly changing. Impermanence is a universal law, and uncertainty is one of its corollaries. No one is immune from life’s uncertainty—the rich, the poor, the healthy, the sick. But for the chronically ill—which includes those who suffer from chronic pain—it can feel as if uncertainty permeates everything we do.
Here are six ways in which uncertainty is a particular source of stress for the chronically ill:
1. Uncertainty about what plans to make with people
We spend a lot of time figuring out what's best for ourselves. On the one hand, we don't want to over-commit to others and then have to cancel. On the other hand, we don't want to unnecessarily isolate ourselves too much. This constant need to assess what's best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.
2. Uncertainty about how we’ll feel each day
Ths is related to #1. It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. For me, even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment. In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It's an ongoing challenge, that's for sure.
3. Uncertainty about how we’ll be treated by others, including family, friends, and doctors
I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful. Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?
I have two strategies for handling this particular uncertainty. First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.
4. Uncertainty about whether we should ask for help
People write me all the time about this dilemma, and I face it too. Do I line up people to go to the grocery store when my husband is out of town, or do I wait and see if I can go myself? I don't want to ask people to do things for me that I may turn out to be able to do myself, but because I never know how I'll feel on any given day, how can I know what kind of help I'll need? It can be so frustrating!
5. Uncertainty about how routine medical procedures will affect us
If people don’t have health problems, at least they have a good idea of what side-effects to expect, even from an unpleasant procedure, such as a colonscopy. For the chronically ill, however, a routine procedure can trigger a flare in symptoms which it can take days or weeks to recover from. Because of the uncertainty of how I'll react, I find myself putting off routine procedures. I'm aware that this is not a good habit to get into because a routine test or procedure could reveal a serious medical problem that needs immediate attention.
6. Uncertainty about the future
Most of us don’t know what course our chronic illness will take. Will we stay the same year after year? Will we get progressively worse? Or, will we wake up one morning and not be in pain or feel sick anymore? Because we don’t know the answers to these questions, it’s hard to plan for the future. This uncertainty is particularly stressful when it's in relation to long-term decisions—for example, how long we might be able to live independently.
For me, it’s often in relation to what I’d do should my own caregiver need a caregiver. What if I needed to be at his bedside in the hospital for days at a time? What if he developed a chronic medical problem and needed a caregiver of his own to take over the household tasks?
This is a mental balancing act I engage in frequently. I deal with it by trying to walk a middle path between not polluting the present moment by dwelling on the uncertainty of the future, but also not ignoring the need to plan for some very real possibilities that could come to pass.
Accepting life’s uncertainty is difficult for everyone, but particularly for the chronically ill.
In my book, How to Wake Up, I suggest an approach to uncertainty:
Upon getting up each morning, we can reflect on how we can’t be certain if the day will unfold as we think it will and then resolve to greet it nonetheless with curiosity and wisdom. Greeting the day with curiosity means being interested in what each moment has to offer. And greeting it with wisdom means not turning away in aversion from our experience, even if it’s unpleasant and even if it’s not what we had hoped for.
What I’m recommending here is that we work on making peace with life’s uncertainty since it’s an inevitable part of the human experience. This is a daily practice, and on those days when we fall short and simply can’t greet what’s before us with curiosity and wisdom, we can at least take good care of ourselves by acknowledging with compassion how hard it is to live day in and day out with the uncertainty of chronic illness.
© 2014 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)
Visit www.tonibernhard.com for more information
This may also be helpful: “How to Cope with Personal and Global Uncertainty.”