The uncertainty that the chronically ill face

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 true whether we live in a third-world country or in the most advanced scientific and technological environment. It’s also true whether we’re struggling to make ends meet or living in the lap of luxury.

No one is immune from life’s uncertainty. But for the chronically ill — which includes those who suffer from chronic pain — it can feel as if the number of life factors subject to uncertainty has increased exponentially. Indeed, perhaps the hardest thing about being chronically ill is the uncertainty it brings to almost every aspect of life.

Here are six ways in which uncertainty is a particular source of stress for the chronically ill:

1. Uncertainty about how we’ll feel on any given day. 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 begin to make peace with the uncertainty of my symptoms. On a day when I have an obligation that I can’t cancel, I find it helpful to tell myself: “Whether you feel your usual sick self or your extra sick self, this is something you have to do, so do it as gracefully and with as little complaining as possible.”

2. Uncertainty about what social commitments to make. This is related to #1. We’re constantly engaged in a balancing act of not over-committing ourselves, but also not unnecessarily isolating ourselves from others. These mental gymnastics are exhausting. They begin for me as soon as someone asks if he or she can come over for a visit. If I say “yes,” how do I know I’ll be well enough to keep the commitment when the day arrives? Shouldn’t I just say “no” since I might to have to cancel on short notice? On the other hand, if I say “no” and then feel well enough to visit on that day, I’ve passed up an opportunity to be in the good company of another person. Whew. Managing chronic illness is hard work!

In the end, each of us has to make the best educated guess we can as to what to do when the opportunity to socialize arises. In my case, because I never have a day when I don’t feel sick, I tend to choose the “safe” alternative and decline the offer of a visit, even though I recognize this means I may well be more isolated than is necessary.

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 how much help to ask for. 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? About a year ago, when he was gone for two weeks, I told him that he need not stock up on too much food because I could go to the store if I needed to. But I forgot how much energy it takes just to do the little household tasks that he handles when he’s home. As a result, I didn’t have any “juice” left to go to the store. For five days, the only veggie I ate was spinach! Then my neighbor, Nadine, learned from one of my Facebook posts that I was home alone, and she asked if I’d like her to go to the store for me. Needless to say, I jumped at her kind offer.

5. Uncertainty over how we’ll react to a routine medical procedure. No one likes to get a tooth filled, let alone a root canal. Then there’s that lovely procedure known as the colonoscopy. If people don’t have health problems, at least they have a good idea of what side-effects to expect. For the chronically ill, however, a routine procedure can trigger a flare in symptoms from which it can take days or weeks to recover.

This uncertainty about how we’ll fare can have serious consequences. I find myself putting off routine procedures because of the uncertainty of how I’ll react to them. The only one I’m diligent about is the colonoscopy because my mother had colon cancer. Fear trumps uncertainty in that instance.

I’ve learned that the best way to handle a colonoscopy or any procedure I’m concerned about is to acknowledge the stress I feel due to the uncertainty of how it will affect me, while also telling myself that this is important self-care — important for maintaining what I think of as “wellness within illness.”

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 can be 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. I had a taste of this possibility last year when my husband had a severe allergic reaction (probably to something he ate), and I had to take him to the Emergency Room. This experience drove home to me, both my limitations and the toll that uncertainty about the future takes on me.

With effort, I can sit in a chair for about two hours before I feel as if I’m going to keel over. Once we got to the ER, I sat by my husband’s bed as they hooked him up to an IV and put an oxygen mask on him. Then I waited as he lay there, barely conscious and unable to communicate with me. In addition to being worried about him, I was under stress because of the limitations imposed by my illness. Specifically, I had no idea what time frame we were looking at: would we be there for an hour or for six hours? (It turned out to be the latter.)

After two hours, I could barely sit upright in the chair, so I told the nurse that I suffered from a chronic illness that made it necessary for me to lie down for a short time. She politely told me that I should go home and call them in a couple of hours to see how my husband was doing. No way! I wasn’t going to leave him alone when he’d yet to respond to their treatment. Not knowing what else to do, I called our friend Richard. When he arrived, I left him the room with my husband and went out to our van to lie down for a while.

As I lay there, uncharacteristically, I felt as if my life had come to a sorry state. Here I was, in a parking lot, lying on the dog’s hair-covered and not-so-fragrant blanket, pulling whatever I could find over me in order to keep warm (including newspapers), using my lumpy purse as a pillow. When I returned to the ER, my husband had his eyes open and was no longer disoriented. After another two hours, they discharged him and I drove us home.

Once I felt confident that he’d be okay, uncertainty about the future hit me hard. 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? Should I even be spending time worrying about events that may never materialize? (This kind of “should” always contains a dose of negative self-judgment.)

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.

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Living with life’s uncertainty is difficult without the added challenge of chronic illness. Sometimes the activities I loved before I got sick feel as if they’re dangling in front of me like a carrot on a stick. Will I ever be able to do any of the things I treasured so much before I got sick? What does the future hold? I just don’t know.

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.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and SorrowShe can be found online at her self-titled site, Toni Bernhard.

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