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.