About 50 million of us in the United States have a secret, hidden handicap: chronic pain.
Yet we, myself included, dissemble well. When we put down our crutches, walkers, and the outside accouterments of disability, people might never guess what we are contending with. We hide the pain behind the mask of a smile and suppress it artfully in our interactions. But the cost is high: The toll of dealing with pain and its concomitant afflictions — day in and day out, week in and week out, month in and month out — is often unbearable.
Pain saps our energy and kills our sleep. It’s enraging in its stealth. In addition to hand arthritis, I struggle with back and hip pain, which become worse as the day progresses — the more I move and walk, the more pain I am in. I start the day feeling normal, but through simple tasks like getting breakfast, getting cleaned up, and walking around the house, I agitate the Pain Gods. They are out for me.
Noon is my witching hour, and the name of the game then becomes “fight and contend.” I marshal all of my psychological strength and all my techniques: medicine, lidocaine patches, more medicine, stretching, rest, and sitting on the heating pad. These are my temporary bandages until the pain gets to be too great and it’s time for meditation and a nap. Alongside this battle, I try to accomplish my “other life” — to be a loving spouse and a writer, complete chores of the day, and make phone calls to doctors to inquire about different solutions.
Struggles like these are enough to make those of us with chronic pain irritable, angry to the point of enraged, and desperately sad. At times, we get depressed enough to question the value of our lives. Before I found the right combination of medications for myself, the thought “I wish I were dead” kept coming for me even as I battled with all swords blazing to chase down treatments that might be more helpful with my pain.
To this day, I sometimes find myself embarrassed, even ashamed, at my disability, which limits me from being more active, walking with my friends, engaging in active hobbies, and generally participating more fully each day in my life.
As a (now retired) psychiatrist, I’ve tried to figure out why this shame creeps up in me. I recognize that embarrassment and its bullying companion shame are normal reactions to not being able to smoothly fit in and take care of myself. We strive from a young age to be independent but, at the same time, to be like others. In adolescence, we want to be different but only in the ways that we choose to be different. We try to fit in and conform closely to the norm of our friends. If we are lucky, as we enter a later phase of life, we try to define ourselves according to our own life goals.
Even so, our society prizes being fit, flexible, and fast. Those of us who differ, who fall outside the bounds of “normal” and look different or need special help or stand out because of our disability — we, the slow and lame — resent it. Even if we wish to, we can no longer slide in unnoticed among our peers.
The disability of pain uproots us. We are no longer in control; we no longer call the shots. We may have to relinquish our jobs or give up the hobbies that bring us pleasure and bind us to others. It’s human nature to want to be nimble, quick, and agile. Whether we’re a psychiatrist, farmer, taxi driver, desk worker, or teacher, we all still want to be like the young and flexible versions of others we see — the selves that most of us remember we once were.
Struggles like these are enough to make those of us with chronic pain irritable, angry to the point of enraged, as well as desperately sad.
Like it or not, this daily struggle can feel tantamount to a climb of Everest. It doesn’t make for stories as good as the summiting of mountains, but we should and can feel equally proud of our difficult trek through this wilderness. I always strive to do it with humor and grace.
Immediately after the most recent of my 17 surgeries — the eighth one on my hips and back — I experienced several post-operation complications. Once home, my husband and I began taking daily “sojourns” outside, step by tortured step. The first day, I could only walk midway to the neighbor’s house before I needed to return home. The second day, the goal was to walk to the end of the neighbor’s house; the next day, the neighbor’s fence. And so it went. Way down at the end of the block, just up a tiny hill, we could see a large oak tree. We called the sidewalk next to it my “Hillary step” after Sir Edmund Hillary and his summit of Everest. Each day, we would joke that I was moving in on the “Hillary step.” Eventually, I made it. A huge accomplishment for me — yet also painfully sad.
This challenge had forced me to begin to confront the loss of those days when I had painlessly and vigorously hiked and skied small mountains. Such is the grief work of living with debilitating pain. We must psychologically accept our new lives and mourn our former lost selves, much as we would mourn a friend or relative who has died. For it is only by going through the steps — the anger, sadness, rage, grief, hopelessness, and even despair — and acknowledging each one that we can get to the other side.
And there, on the other side, we have to greet our new selves with love, find the specialness of each day’s life, and cling fast to both. Acceptance is key. And hopefully, we can find at least one activity that sustains us and even soothes us. It is essential to accept help from others, as part and parcel of the human condition, recognizing that the other person can choose to feel enhanced by giving help or choose to feel diminished. It is those who thrive on compassion —whether it’s caregivers or friends and family — with whom we want to surround ourselves. They can help us feel whole and accepted and loved despite our handicaps and limitations. And, in turn, we must work as hard or even harder to give as much or even more than we receive.
Finally, we need to find some good guides who will help us with our climb. We need good doctors, specialists, therapists, and experts in meditation who can assist in directing us to new modalities, new areas of research, new medicines, and new ideas. It is they and compassionate friends and family who can lend the hope we need in our lonely struggle with this hateful, vicious handicap beneath our clothes.