When I underwent a procedure that my oral surgeon described as “just a snip,” my life changed. A longtime citizen in the land of the well, the surgery left me a deportee to the land of chronic pain.
Overnight, I became a permanent resident—me, and some 100 million other American adults. We each cope with some illness or condition that causes pain that, in turn, can affect our ability to enjoy our lives.
Despite our numbers, most of us feel alone, isolated, and stigmatized. Clinicians tend to shame, shun, dismiss or disregard us, especially if pain leads us to opioid treatments. We come to sense that there is something wrong with us – not just our bodies, but our spirits. If we were only more stoic-stalwart-hardier—we would simply get up and get moving.
You are not your pain. On days when my pain is—literally—through the roof (my pain is centered in my mouth), I cannot eat solid food or speak. When that happens, I want nothing more than to be alone with my sorrow—but to be in the presence of someone who understands. It can feel so hopeless.
I am not my pain. I am a wife, mother, worker, writer, sister, daughter and friend. My world is rich and rewarding. I want for nothing – save pain relief. A friend, mindfulness expert Erik Engberg, suggests that we can find comfort in understanding the impermanence of our experience and our lives. All of life, Erik writes, is change, and living with challenges like chronic pain is hard, but not impossible. In fact, although the pain may be a permanent fixture, the sensation is impermanent. Some days are better than others. I must choose how much I want to let it control my experience—or how much I want to control it.
You are not alone. More than one-third of American adults live with some kind of pain. Some of us may have nervous systems that, for an array of complex and vexing reasons, amplify our brain’s perception of pain.
We have been taught not to reveal too much about our health and our problems, to always put on a happy face and carry on, and keep our troubles to ourselves. But I have found real support in an online group of others who live with chronic pain, where we share experiences, solutions, and hope.
Release fear. Fear is a demon, and letting it roam in my thoughts just fuels anxiety: Will I wake up with pain at a 10 or a 2? If the former, can I go to work? Will I lose my job? Will I lose my family? My home? My life? People with pain find it easy to catastrophize the pain. I am finding courage in knowing that cultural changes are happening, that research is underway, that more and better awareness and education may lead to better, less harmful, treatment options. Fear has no place in the better days ahead.
Take your meds: and a nap and a walk. Medications are only moderately effective some of the time for most of us—and they can have dangerous side effects. More and more, however, researchers are understanding the complex biological interplay of body and mind, the mechanisms of pain pathways, and the effects of stress on the immune system. I know, for instance, that if I can just drag myself to Zumba for an hour, I will lift my spirits so much that the pain slips away for a few hours.
Dr. Daniel J. Clauw, a psychiatrist who researches and specializes in chronic pain, reports on evidence that exercise and sleep can have pain-relieving and restorative effects. Both help to disrupt the over-amplification of pain signals in the brains of people who have chronic pain. He notes that, of course, many people are far too debilitated to really get out and exercise, but anything that you can do to just move a little and be more active will have a healing effect.
Sleep is an essential remedy, but it is elusive for people in pain. If you are a chronic pain patient, ask your doctor what you can do. Prescription medications are available, of course, but many of these interact with opioids. I use Melatonin on very bad nights—and when I sleep well, I feel better.
Scientists and clinicians know we are here—they have not forgotten about us. Pain patients are so used to being told that what we experience is not real that we tend to think the world of treatment and care will never change. But a scientist, Dave Thomas, sent me information about the NIH Pain Consortium, in which all of the Institutes are working not only to understand the mechanisms of pain and how to treat it, but to develop programs that train clinicians more effective ways to help us.
In a short video, Dr. Thomas says: “I’d like to tell people in chronic pain, we know you’re out there, and we’re trying to come up with better treatments, we’re trying to come up with better strategies for educating people.”
Nourish your spirit. The experience of daily pain can starve the spirit. Try not to let it. I find relief in childhood prayers, holding my late grandmother’s rosary and just talking to her spirit, asking memory to wash me in the force of her love. I have also learned a Buddhist practice, metta, a loving-kindness meditation in which you move your thoughts from your own desire to be healed and at peace, to encompass the lives of all the people you love—and all the people, period. You will find many versions, but the one I can keep in my head is simple:
May you be well.
May you be happy.
May you be at peace.
May you be loved.
Be kind and nourish others. I am a remarkably imperfect person, and pain can make me profoundly irritable. I try hard to tame that aspect of myself—and when I fail, more often than I like, I try to retrace my steps and apologize to anyone who has received my unkindness. My experience of pain has taught me to know, very deeply, that we each need kindness, for we each suffer. On that, I leave the last words to the profound wisdom of Maya Angelou, who taught us all to sing, no matter what our cage:
I’ve Learned that people will forget what you said,
people will forget what you did,
but people will never forget how you made them feel.
Image Credit: VintageAdarama on etsy