Like many people, I live with pain every day. I’m lucky that, for the most part, my pain is tolerable and doesn’t interfere too much with my life. I walk slowly—but I walk. I sleep badly, but I sleep. It’s tough to sit in a car going long distances. Fortunately, my wife now does the driving, and we can travel for a few hours at a time. I’m often grouchy, but I still have people I enjoy being with and who seem to enjoy being with me. I’m sometimes very distressed that my body has betrayed me, but I also get a great deal of satisfaction from the things that I do. There are medications other than opioids that help when I need help coping with chronic pain. Usually Tylenol. Sometimes cortisone. I have to be very careful about the medications I take because I have diabetes and chronic kidney disease. The anti-depressants often used now for my kind of pain make me impotent. Some doctors have urged me to take them anyway. “What does sex matter at your age?” I’ve been asked. On to the next doctor.
Michael B. Friedman, LMSW
Ten years ago, the pain I had to live with was much worse. Over a period of two years, I lost the ability to walk except very, very slowly with a walker. I used a wheelchair so that I didn’t delay others too much. The pain would become so bad that it brought me close to tears, and on those occasions, I used an opioid or, preferably, vodka—a very effective painkiller. Eventually, after seeing about fifteen medical professionals, a tumor inside my spinal column, putting pressure on the spinal cord, was discovered. It was removed. I learned to walk again; my pain diminished so that I was no longer tempted by opioids. But my spinal cord is damaged and deteriorating. Thus, constant pain in my leg.
So, I know a thing or two about coping with chronic pain, about the experience of it, about the disheartening, angering impact of it. As I did some research to prepare to write this piece, I began to wonder whether the professionals who give advice about how to live with pain really understand what it’s like.
The advice they give sounds right and is pretty much the same as the advice that mental health professionals give for everything—coping during the pandemic, delaying dementia, tolerating the slings and arrows of life in a troubled world, etc.
For example, in its article on coping with chronic pain, the Cleveland Clinic notes, “Four major lifestyle factors can affect your chronic pain and help minimize it.” Four “pillars,” they call them. They are—get ready for this—reduce stress, exercise, eat well and sleep well.
Give me a break! As if, being told this, my eyes would be opened, and I would calm down, go to the gym, give up the foods that make me happy, and, just like that, close my eyes in a room without a TV at night and sleep peacefully except for getting up to pee.
It’s good advice, of course. But it is as hard to take as it is easy to give.
Reduce stress? Ok, maybe I could do meditation or practice “mindfulness,” whatever that is. But stress has been my lifestyle forever; it is hard to change now. Do the experts have any idea how stressful it is to work or socialize while in pain? Or how stressful it is not to know when pain is going to make it impossible to do what you’ve planned or to find anything pleasurable?
Exercise? Off the couch, Mr. Potato! Hell, I’m not on the couch. I’m at the computer writing, editing photographs (I’m a semi-professional photographer), trying to read (did I mention my macular degeneration?) Etc. Not to mention the fact that I, like millions of others with or without chronic pain, just don’t have the discipline to exercise, and telling us that we should doesn’t help much. A little more guilt, some additional self-loathing. Not to mention the fact that exercise is painful when you’ve got chronic pain!
Eating well? Come on—this is the most obese nation in the world. Besieged by advertising for delicious fast foods filled with calories and God knows what else that’s bad for you. Not to mention that foods and drinks that make us happy and help us cope with stress, like ice cream and martinis, are not what we should be eating and drinking except in great moderation. Personally, I happen to like vegetables, and I’ve given up alcohol because it contributes to gout—a very painful condition from which I also suffer from time to time. But I also like a good steak rippled with veins of fat. And champagne. It’s bad enough to live with pain. To deprive ourselves of great food and drink—that’s asking a lot.
Sleeping well? Judging from advertising on TV, at least half the people of America are searching for something to help them sleep. And all of the information sheets about coping with chronic pain tell us that pain contributes to insomnia. We all know that pain is worse at night when we are not doing something that might distract us from the pain. But—snap of the fingers—we’re supposed to change our sleeping habits. No more naps. No more TV while lying in bed. Use the bed only for sex and sleep. “Sleep hygiene”, as it’s known. And no more dwelling on my pain while lying sleepless in the darkness of my bedroom! Right!
OK, OK. It’s all good advice, and it is undoubtedly worthwhile to work at managing stress, taking care of your body, and practicing sleep hygiene. But give me a break; this is not easy. And, to say it again, I wish the tip givers understood better than they seem to that giving good advice is easy, but good advice is hard to take.
Michael B. Friedman, LMSW, is a retired social worker and mental health advocate who continues to advocate for improved care for people with cognitive and/or behavioral health conditions as a volunteer. His writings are available at www.michaelbfriedman.com. He can be contacted at mbfriedman@aol.com.
Chronic pain is obviously not fun, but this article doesn’t help at all. That’s because it denies any role that the sufferer can take to actually make a difference. It basically says I am who I am and any attempt to change who I am is hopeless. No exercise? No Physical Therapy? I get the occasional drink, And the occasional comfort food — Maybe occasional is the operative word. But to do nothing to help oneself is depressing.
Now that I work with an older population, I am much more aware of the impact of chronic pain on everyday life. I am very concerned about how many people are being referred to pain management clinics that prescribe Opioids as a front-line approach, though they have a place too. Your article is a good reminder to be more empathetic/realistic when delivering the 4 pillars advise.