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Like many athletes, I’ve had my share of injuries—I broke my ankle playing basketball, blew out my hip while training to be a place kicker in the NFL, and strained my knees and shoulders—which means I’ve lived with pain most of my life. But I’ve never had more intense pain than when I developed cervical dystonia, an involuntary contraction of neck muscles that causes the head to twist to one side, 20 years ago. It has affected nearly every aspect of my life, and few people understand its enormous impact. They have no idea how much I need to do just to get through the day.

In the early years of my diagnosis, I experienced sleep deprivation, intense anxiety, depression, and loneliness. Work was impossible and friends disappeared. The few activities I could still do, I had to modify so they didn’t exacerbate the pain. After about five years of misery, I began to learn new ways to manage my condition. In the process, I was startled to realize how mindless my previous life was and how much I took for granted.

To ease my physical pain, I use a variety of tools like massage machines, trigger point tools, ice, heat, topical lotions, and nerve stimulation devices. If I’m lucky, I get actual massages from loved ones. I also have special pillows, custom desks and chairs, and various supportive back and seat cushions. And I spend a lot of time resting.

When people see me out and about, say in a grocery store, they may assume I’m functioning just fine. They don’t see the muscle tension or dizziness, and they have no idea that I have to rest before and after.

During the worst years of my illness, I was dismayed by people’s reactions. Everyone thought I’d recover completely after a few treatments. They equated my dystonia to the flu or a broken ankle. Most of us can deal with the pain or discomfort or limitations imposed when we’re sick or injured because we assume it’s temporary. With a chronic illness or pain, there’s no recovery clock. In many cases, there’s no recovery at all, just symptom management.

To help people be more understanding of those of us living with chronic illness and pain, I’ve highlighted some constants.

Unpredictability causes anxiety. Some days I can do certain things and the next day I can’t. On any given day—or even hour—I don’t always know what I can do. Not knowing how I’ll feel or what I can do from moment to moment is unsettling. To deal with the anxiety, I try not to worry about what the next moment or the rest of the day might bring. I try to feel as much joy as I can. When I have a flare-up, I tune in to my body and slow down without getting angry or discouraged. I find that an emotional reaction makes the symptoms worse.

I can smile through pain. When I’m laughing or happy it doesn’t mean I’m free of pain. Over the years, I’ve adopted coping mechanisms, such as gentle rhythmic breathing, that disguise pain. Since it’s impossible to see or measure someone else’s pain, it’s important not to judge the person.

Patience is required. On days when my pain and other symptoms are high and/or my energy levels are low, I may not respond to voice or text messages right away or even answer the telephone. And it can take me a long time to recover from what seems like easy daily tasks. For every hour of work, especially physical, I usually need a minimum of one hour of recovery. Some days, just a tiny bit is all I can do. Other days I can do a lot more. I never know, which is why I might cancel plans, maybe even at the last minute, or leave a social gathering if symptoms kick up. I may suddenly need to lie down and rest, or use ice, heat, a massage machine, or trigger point tool.

Small accomplishments are meaningful. My condition has taught me to be more at ease with myself and take pride in my daily achievements—doing laundry, shopping for groceries, dining out—even if they pale in comparison to what I could do before dystonia.  

Silence is golden. I’m often most at peace when I’m quietly meditating, engaging in purposeful breathing, doing a guided visualization, or spending time in nature listening to the sounds and enjoying the scenery.

Tom Seaman is a life coach in Wilmington, NC, and the author of two self-published books: Beyond Pain and Suffering: Adapting to Adversity and Life Challenges and Diagnosis Dystonia: Navigating the Journey.