Dealing with Tough Choice after Tough Choice

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By Toni Bernhard

Editor’s Note: Toni Bernhard, J.D., is a retired law school professor, the author of three books (including How to Be Sick) and the writer behind the Turning Straw into Gold column at Psychology Today. She has been a member of our community for more than a decade. The article below is taken from How to Live Well with Chronic Pain and Illness: A Mindful Guide, copyright 2015 by Toni Bernhard. The article is excerpted with permission from Wisdom Publications.

Start where you are. Use what you have.
Do what you can.
—Arthur Ashe

Being chronically ill can feel like a full-time job—an exhausting one at that. We’re constantly engaged in an ongoing evaluation of whether we’re managing our health and our relationships with others as skillfully as possible.

Then, based on those assessments, we have to choose the most beneficial course of action, even though the choice may not be a completely satisfying one. That’s why what follows are not just choices but tough choices.

Do we talk openly about our health problems, or do we keep them private?

In chapter 1, I wrote about the importance of trying to educate those we’re closest to so that we can receive the support and understanding we need. But what do we do about the many other people we encounter in life, such as coworkers and casual acquaintances? How do we respond when they ask us how we are?

On the one hand, if we talk openly about our health problems, some of them may turn away in aversion and avoid us from then on. Others may have the opposite reaction; they may become so concerned about us that we find ourselves in the role of temporary caregivers, having to reassure them that they shouldn’t worry and that we’re coping fine (even if we’re not).

Still others may take it upon themselves to lecture us on what they think we should or shouldn’t be doing—and then be upset with us if we don’t follow their advice.

On the other hand, if we treat our health issues as private— even acting “fake healthy” as I’ve been known to do—we risk misleading others about what we’re capable of doing. In addition, hiding our symptoms can make us feel as if we’re betraying ourselves by being dishonest about what our lives are like.

Finally, by keeping quiet, we may be passing up a genuine opportunity to connect with another person and to receive much-needed support—both emotional and practical.

And so, when faced with the dilemma of how to respond to someone’s inquiry about how we are, we have lots of choices. Quickly assessing the situation and then making an on-the-spot decision about what to share and what to keep private can be exhausting.

I can’t offer a simple answer to this dilemma or to the other tough choices in this chapter. All we can do is try our best to evaluate our circumstances and our needs, and then choose the course of action that appears to be the most beneficial and compassionate for us.

Do we take medication to relieve disabling pain, or do we stoically put up with it because the medication makes us groggy and less functional?

I’ve yet to meet anyone who likes the side effects of pain medication; even so, it’s a tough choice: a body in unremitting pain or a mind like silly putty. Neither choice is satisfactory, but we still have to make it. Which choice we make on any given day may depend on several factors, such as what our “have to’s” for the day look like and whether we’ll be spending time with other people.

Related to this tough choice is the decision of how to allocate pain medication if we’re only given a certain amount each month. Here’s what Carol, who has chronic migraines, said about this:

Insurance companies limit the amount of pain medication they will give us per month. The problem is that if you get fifteen to eighteen migraines per month as I do, the nine pills allowed must be doled out very carefully. So not only do I have a migraine, I have to assess it: maybe it’s not so bad that I need to medicate... but what if it gets worse? And how many pills have I already taken this month? If I take more than four by mid-month, I won’t have enough to get through to the end... but if I let it get too bad, then the medication doesn’t work as well and I am down and out for a couple of days.

I’m exhausted for Carol just reading this.

Do we ask for help with anything that’s difficult for us, or do we save up our requests and use them only when there’s something we absolutely cannot do?

On the one hand, we don’t want to overburden family and friends. In addition, we treasure what independence we still have. These concerns incline us toward going ahead and doing what we can, even though there may be some payback later.

On the other hand, if we’re stingy in asking for help, friends and family might assume we’re able to do much more than we’re capable of: “You were able to go to the store, so you must be able to go to the beach for the day.” Knowing that we might get this kind of reaction if we try to do even the smallest tasks makes us wonder if it wouldn’t be better to always ask for help.

Do we push our body to the limit, or do we always play it safe?

One item on chapter 2’s not-to-do list for the chronically ill was not to ignore your body’s pleas to say no to an activity. I also indicated that there may be exceptions to this rule. Deciding when it would be skillful and self-compassionate to make that exception is one of the toughest choices we face.

Sometimes the desire to be like healthy people is so strong, I rebel and talk myself into pushing my body to do what it cannot reasonably do. A few years ago, my granddaughter Cam was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.”

We have a park next door to our house. I took her there for over an hour, helping her with the slides and pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” Ah, the perils of pretending.

What I got for my effort was three days in bed with exacerbated symptoms. In retrospect, the skillful choice would have been to listen to my body and not go to the park. Cam wouldn’t have minded. We could have played Go Fish on my bed instead.

However, sometimes a special occasion arises, and we might decide that pushing our bodies to the limit is worth the payback. In that case, for the good of our emotional well-being, the compassionate choice may be not to play it safe.

In April of 2014, I agreed to go on a short vacation to a beach cottage that’s about an hour and forty-five minutes from our home. Our son Jamal, his wife Bridgett, and our granddaughter Cam planned to join us there. This was a big trip for me; I rarely leave town because flu-like symptoms keep me from being out of bed for too long.

The exertion it took to pack for the trip, followed by riding in the car and then unpacking once we arrived at the cottage, pushed my body way beyond its limit. As a result, I spent most of the four days of the vacation trying to recover from the activities involved in getting there and settling in.

I tried to hide how sick I felt, although my family has been around me long enough that they knew anyway. Still, they sensed that I didn’t want my illness to be the focus of the trip and so, taking their cue from me, we didn’t talk about it.

During the daytime, I let myself be guided by the caring attention of mindfulness. This meant listening to my body, and so, when the family went down to the beach, except on the last day, I stayed behind to rest in bed. Despite these precautions, after we returned home, my body collapsed for a week, as if it had been doing its best to hold me together for the four days, but couldn’t do it for one more minute.

The trip and the recovery afterward were a tremendous strain on my body, but I don’t regret going. It was a rare opportunity to spend extended time with my son and his family, even though I know they’d have understood if I’d said I couldn’t come.

I made this decision freely and fully aware of what I was getting into. But it was a tough choice.

Finally, on a lesser scale, I also think it’s skillful to gently push our limits now and then so that we don’t fall into a set pattern; our bodies can become so accustomed to a strict regime that we lose the ability to be flexible.

For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully vary the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule.

That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap. I find this constant assessing and adjusting of my schedule to be mentally exhausting. I do it anyway, because I believe it’s beneficial to my overall health.

* * *

I’ve used the word “exhausting” multiple times in this chapter. It’s no surprise that physical and mental exhaustion are consequences of having to continually assess, evaluate, and choose a course of action while already struggling with chronic illness.

Mindfulness can help here. We can remind ourselves to pay attention with care to the pros and cons of each choice. That will slow us down, making it more likely that we’ll choose the alternative that’s most beneficial and compassionate for us at the moment.