After more than fifteen years of being mostly housebound by chronic illness (which includes chronic pain), here are a few of the dilemmas I’ve faced over and over. I’m confident that I’m not alone in my “should I/shouldn’t I?” world.
Do I accept an invitation from a friend to get together or do I refuse it?
If I refuse the invitation, depending on who issued it, it may be the last one I’ll receive from this person. In addition, if I refuse, I’ll feel even more isolated from in-person contact than I already do.
If I accept the invitation, I might be too sick to visit when the day arrives. I don’t want to disrupt my friend’s plans in this way. Before I became chronically ill, I was so dependable; I wish I could be that way now. Not keeping a commitment tends to make me feel bad about myself, and that’s not good for me, so sometimes it feels more self-protective to just turn down an invitation from the start.
Do I tell family and friends how I’m faring with my health or do I keep it to myself?
If I talk about my health, I worry that they’re tired of hearing about it. Recently, a woman wrote to me about a chronically ill friend whom she loves and tries to support, but who does nothing but talk about her medical problems. The writer said that no matter how their conversation starts, it always turns to the subject of her friend’s health. She told me that she has problems of her own that she’d like to talk about, but it never happens. She wants to be honest with her friend, but is afraid she’ll offend her if she tells her how she feels.
If I don’t talk about my health, I increase my sense of isolation because, let’s face it, chronic illness is a major feature of my life. Not a day goes by without my having to think about it, and not a day goes by without it impacting me some way. Sharing my life with others brings me closer to them.
Do I keep a routine follow-up doctor’s appointment or do I cancel it?
It’s a strain on my health to make the trip to a doctor’s office. That’s why the question of whether go to a routine follow-up where I have nothing new to share can be a dilemma for me. (I currently have two routine follow-up appointments I’m supposed to make … but I haven’t.)
If I go to the appointment, it may be a waste of my time. (A funny side-note: I recently kept just such a follow-up where I had absolutely nothing new to report to my primary care doctor. Two hours later, back at home, I came down with a bladder infection. I sure could have used that appointment then!)
If I cancel the appointment, I might miss some new information the doctor has. Since I’ve been treated for breast cancer, I’ve added three types of oncologists to my “routine follow-up” list. I’m always tempted to cancel, but I’ve learned one thing that I even joke about with my husband: never cancel a follow-up appointment with a cancer doctor! This may not be true for everyone but, afterward, I’m always glad I went because I never fail to learn something useful.
Do I try to look my best when I’m around other people or do I let my looks reflect how I’m really feeling?
If I try to look my best, I’m concerned that people will misinterpret the state of my health. Doctors may not realize how sick and in pain I am. Friends may not understand why I have to cut short a visit. Family may not understand why I’m not pitching in at gatherings.
If I let my looks reflect how I’m feeling, it can negatively affect my morale. It’s good for my emotional well-being to spruce up a bit!
If a special opportunity arises, do I go beyond what I know my body can comfortably handle or do I play it safe?
If I participate, the payback may land me in bed for days.
If I play it safe, I could be missing out on something that will give me an emotional lift. Recently, I was invited to give a short book talk at a place that’s special to me. Unfortunately, it was a two-hour drive from where I live. Before I got sick, that would have been no big deal but now, even with my husband driving, it’s well beyond what I can comfortably handle. I went, and I’m glad I did; but I’m also glad I don’t have any commitments like this in the future. The payback has been very tough.
Do I try a new treatment someone is urging on me or do I take a pass?
If I try the treatment, not only is it likely to be expensive, but I might be setting myself up for disappointment if it doesn’t work. In my book, How to Be Sick, I write about how important it is for our peace of mind to work on accepting, without bitterness, that some things work for us and some don’t. And yet, I can’t help but always get my hopes up at least a little bit.
If I don’t try the treatment, I could be passing up something that might help me. Not a week goes by without someone suggesting a new treatment. Sure, I know immediately that some of them aren’t for me. But what about those that sound reasonable? This “should I/shouldn’t I?” dilemma is one of the most difficult I’ve faced since becoming chronically ill.
Do I pursue a new interest even though it exacerbates my symptoms or do I stick to my old routine?
If I pursue it, even though a whole new world might open up to me, I’ll may feel more sick as a result of the mental and physical exertion.
If I don’t pursue it, I’m limiting my already limited options even more. In addition, I’m passing up a chance to focus my attention on something other than my health. This is a “should I/shouldn’t I?” dilemma I’m facing right now. Many years ago, I tried my hand at painting. In an effort return to a creative task that had brought me such joy, I recently got out my paints and brushes (I use water-soluble oils, so I’m not exposed to turpentine fumes, etc.).
Unfortunately, I’ve found that working even for a short time uses up my energy stores and, worse, exacerbates my symptoms. The result: When I paint, I feel more sick. And so, I have a dilemma: should I continue to paint and feel more sick or should I stop doing something I’m feeling passionate about at the moment so that I’ll feel less sick? I’m in the process of deciding.
What I want, of course, is to paint and to not feel more sick, but we know from the Buddha and The Stones that you can’t always get what you want—a life-long dilemma that presents itself for my consideration every single day.
I’m aware that those of us who struggle with our health don’t have a monopoly on being faced with dilemmas in life. We do, however, tend to share the same ones. I hope this piece was useful to everyone.
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, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, and How to Live Well with Chronic Pain and Illness: A Mindful Guide. She can be found online at her self-titled site, Toni Bernhard.
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