Pretending you’re not sick or in pain adds an additional layer of suffering
I’ve done my share of denying that I’m chronically ill. It’s tempting to pretend that I’m as healthy as can be, but when I ignore my limitations by staying out too long or by insisting on engaging in activities that are beyond my energetic abilities, invariably, I land in bed for days. And so, I’m working on giving up pretending. It’s not good for me physically or emotionally.
My husband and I had an experience many years ago that illustrates the sad consequences that can follow when a person who is chronically ill (or his or her caregiver) are in denial about how their life actually is. We had a childhood friend who lived about two day’s drive from us. Her husband was in his late 40s and had early onset Alzheimer’s. We’d been told by our friend’s brother that her husband was getting progressively impaired and was “absent” mentally most of the time. He didn’t understand what was being said and, when he did try to talk to others, he rarely made sense.
You can imagine how tragic this was for our friend. She could no longer do something as simple as sharing her daily experiences with her partner. Even though I’m mostly housebound, my husband and I are still able to share our lives and do some things together. We can watch a movie and share our reactions to it. We can talk about friends and family. We can toss around ideas for my writing.
One day, we got a call from our friend. She said that she and her husband were taking a road trip and would like to stop and visit us. We were surprised because we thought he was particularly uncomfortable in unfamiliar surroundings and, as a result, they no longer travelled far from home. Of course, we said it would be wonderful to see them. After the phone call, my husband and I decided that perhaps we’d misunderstood the state of his illness.
When they arrived at our house, we immediately sensed that he was disoriented. Nevertheless, we took our cue from our friend, that cue being: “treat him normally.” And so we sat in the living room and tried to visit. As the afternoon progressed, we watched him become increasingly confused and agitated. We also watched our friend become increasingly exhausted as she worked harder and harder to make everything appear normal. For example, if my husband or I asked him a simple question, he would start to say something unrelated to what we’d asked, so our friend would anxiously jump in and “fix” his response.
We’d bought some deli food for the occasion, but when my husband got up to bring it in from the kitchen, our friend signaled to him that he should not bring out either food or beverages, so he didn’t. And that’s how the afternoon went.
After they left, I burst into tears over this tragic situation. Then I called our friend’s brother. He hadn’t known about the trip and was surprised to learn that his sister had attempted it. But he wasn’t surprised to hear how difficult and stressful the afternoon had been for both his sister and his brother-in-law. He said his brother-in-law was barely functional when he was away from familiar surroundings. He told me that this was probably why his sister hadn’t told him about the trip; she knew he’d try to talk her out of it.
In the end, her brother and I concluded that, out of the anguish of having lost her partner in the world, she had irrationally decided to pretend—just for a few days—that everything was okay. So she put her husband in the car and took this road trip. It was the last trip they took together.
It still makes me sad to recall that day, especially because it was so difficult for our friend. Years later, after becoming chronically ill myself, I truly came to understand why, out of denial, she took that trip. I understand…because I used to do similar things.
It’s taken a while but I’ve finally learned that I’m more at peace with my life when I accept my limitations rather than pretending things were otherwise. Happiness comes from making the best of the life we’ve been given.
Toni Bernhard is the author of the award-winning 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 Sorrow. Her newest book is called How to Live Well with Chronic Pain and Illness: A Mindful Guide. Before becoming ill, she was a law professor at the University of California—Davis. Her blog, “Turning Straw Into Gold” is hosted by Psychology Today online. Visit her website at www.tonibernhard.com.