How I Overcome Chronic Pain
I have been in pain, every day, all day, for decades. But it is no longer my identity.
Gareth Branwyn

Gareth Branwyn

Mar 3·13 min read
Human head within a colorful abstract image.
Human head within a colorful abstract image.
Image credit: agsandrew.

I am in pain. I have been in pain, every day, all day, since I was a teen.

I have psoriatic arthritis. Or is it Ankylosing Spondylitis? The diagnosis keeps changing. In my youth, it was identified as juvenile rheumatoid arthritis. And before that, it was “growing pains.”

My current rheumatologist once described what I have as a “miserable, recalcitrant disease.” That sums it up nicely. While the diagnosis and treatment may have shifted over the years, the pain has remained. Sometimes better, sometimes worse, always present. It has been my “dark passenger” since I was 16 years old.

I am a pain yogi. I have not only lived with my pain. I have studied it, experimented with it. I have learned how to re-frame my experience of it and work within it. It would be a gross overstatement to say that I’ve mastered it, but I have at least learned how to productively cope with it.

For the early years of my life, the anger and depression over my disease, along with the largely untreated pain itself, overwhelmed me. Like many faced with such a situation, I became my disease. I saw myself through its lens. The pivot point for me was making a conscious decision to not define myself by it any longer.

I decided that I was going to be who I wanted to be, to do what I wanted to do in my life, and the arthritis was just going to have to go along for the ride. It was no longer going to call the shots. This change all happened after I met the real Patch Adams.

You may think of “Patch Adams” as the character played by Robin Williams in the 1998 film of the same name. When I met the real-life inspiration for that film, he was a weird and wonderful hippie doctor living in a commune in Northern Virginia. He worked the night shift in the psychiatric emergency room at St. Elizabeth’s Hospital.

A friend recommended him when I confided that the progression of my disease, and the prospect of a life of pain and increasing physical limitation, was turning me to thoughts of suicide.

When I had my first conversation with Patch on the phone, it was a fun and hopeful exchange until, towards the end, after we’d arranged my first visit to see him, he ended with: “We’ll see what we can do, Gareth, and if we can’t do much to alleviate your pain, we’ll see how you can ‘get into it.’”

I was angry as I hung up the phone and what he’d said sunk in. “Get into it?” What kind of hippie B.S. was that? It would take the face-to-face visit and some time after that before the life-changing advice behind that poorly-worded statement fully revealed itself.

When I finally met Patch at the medical commune where he lived a few weeks later, he was riding a unicycle in front of a Leland double-decker English bus that had a mural on the side that read: “We’re All Bozos on this Bus” (borrowed from the comedy group Firesign Theatre).

Patch was larger than life at a time when I was rapidly shrinking away from mine. He started peppering me with questions and freely dropping dramatic and romantic quotes from movies and literature (“Life is trouble, only death is not. To live life is to undo your belt and look for trouble.” — Zorba the Greek).

I would later discover that this was Patch’s rather unique idea of a medical intake interview. After the unicycle practice, a game of pool in the rec room (with more questions that seemed to have little to do with my ill health), Patch and I walked the grounds until we settled on a tipi platform (sans tipi) to watch a breathtakingly beautiful sunset.

As Patch and I sat there in awed silence, lost in the technicolor light show before us, he finally asked: “When you watch a sunset like this, do you have arthritis?” The question floored me (shades of “getting into” my pain?). But, I thought about it for a moment and replied: “You know what, I kind of don’t.”

“What else, while you’re doing it, do you not have arthritis?” he asked.

“Dancing,” I replied. “Love-making,” I added. “Oh, and probably while reading a particularly great book.”

“Well then,” he said, “all we need to do is make that list as long as possible. I’m prescribing to you, as your doctor, that you do as many of those things as often as possible. Fill your life with these things.”

“I’m prescribing to you, as your doctor, that you do as many of those things as often as possible. Fill your life with these things.”

At first, I didn’t take it all that seriously, but over time, I came to realize the intent behind this “prescription” and the greater wisdom of it.

Pain is definitely tied to attention. We’ve all experienced this. If you focus on it, if there’s not much happening to distract it, it can become magnified. Overwhelming. If you’re distracted, if your mind and your attention are elsewhere, it can be reduced, or in extreme cases, forgotten entirely—if only for a few glorious moments.

Over time, I added to my list: playing tabletop and roleplaying games, watching movies, listening to amazing music. And I’m such a talker and thinker that I realized that just playing a deep and meaningful round of “brain tennis” with someone helps take me out of my suffering. Oh, and having a positive attitude.

I know such statements to a person in pain can be an instant eye-roller. “Think positive!” But, there is an undeniable truth to this.
You Have Earned Yourself the Right To Be Miserable. Now What?

One of the most powerful and attitude-changing things anyone has ever said to me came by way of a phone conversation many years ago. I was in a bad way. My arthritis and its attendant pains were at a peak. My personal life sucked, my work life, stagnant.

I was passionately cataloging all this to an old friend on the phone. It was a well-thought-out and carefully crafted list. At a certain point, she got tired of hearing my lengthy list of grievances. She blurted out, angrily:

“OK, Gareth. I get it. You won! All of that really does sound good n’ truly s*****. You have most certainly earned yourself the right to be miserable. Now what? What does that actually do for you? Where does that get you?”

This statement plowed into me like a freight train. I tried to come up with some feeble defense of my carefully composed litany of righteous suffering, but when I got off the phone, what she said wouldn’t go away. And it never has. What she said was a game-changer.

We spend so much of our lives cataloging our grievances, our slights, our legitimate tragedies. We stand ever-ready to make our case before some teary-eyed jury in our imaginations (or our family and friends, if they’re kind and patient enough to listen).

But if we make that case—dazzle that jury—if we are awarded a determination of justified miserableness, then what? It serves no useful purpose except to make us even unhappier, angrier at the world. And for those of us dealing with chronic pain, it makes us feel worse. It only serves to magnify our suffering.
You Are Not Your Disease

I came to see Patch Adams because I’d become suicidal over the extent of my physical pain and my perceived future of increased, debilitating suffering. Desperately trying every Western medical, legitimate alternative, and even quack-a-doodle cures I could get my hands on, I’d become overwhelmed by it all. And ever-frustrated by the lack of any meaningful relief. I felt hopeless. I had fallen into the trap of defining myself as my disease.

For me, the first step in my overcoming it was giving it up as the central feature of my identity. I had to convince myself that I was not my disease. And I had to reduce my identification with my arthritis. It seemed like the more desperately I tried to find some “cure” for my disease, the more desperate I became, and the more pained.

I had to let a lot of this go.
“Getting Into Your Pain”

So, we come to that initial bizarre statement that Patch made when I first talked to him on the phone. “We’ll see what we can do and if we can’t do much to alleviate the pain, we’ll see how you can ‘get into it.’” There was actually a real pearl of wisdom inside of that crystal-encrusted, tie-dyed oyster.

Once I’d changed my identification and attitude toward my disease, and had increased the activities that gave me a break from it, I started really paying attention to exactly what was happening to me each day.

Which days were better than others? Why? Was food and drink a factor in how I felt? How much did mindset actually affect how I felt moment-to-moment? I became a student of my own body, how it worked, and what I could do to maximize myself in the world, to transcend my suffering.

I work as hard as anyone, I play pretty hard, too. I live a full, rich, and deeply felt life. I am certain that I would only be able to manage a fraction of what I do if it weren’t for applying all of the things that I’ve discussed here (and taking increasingly better, more targeted medications with fewer side effects). I have, in fact, “gotten into” my pain, to better understand and manage it, and that has helped tremendously.

Not surprisingly, one of the tools I’ve used to help in this skill has been meditation. In my youth, shortly after the time I met Patch, I became a hard-core meditator and meditated daily for years. I don’t meditate much anymore, but I know that the skill-set, of mindfulness, breath control, and the discipline it requires, has helped me to better understand and manage pain.
Don’t Leave All-Together

One of the pitfalls of learning how to manage and background pain, to use your imagination and attention-direction to “leave your body,” is that, to no great surprise, you need your body.

For those with arthritis (and other chronic illnesses), we need to take as good care of our “physical plant” as we can manage in trying to fend off the advance of our disease. I have gotten so good at parking most of my attention in my head that I can completely be unaware of what’s going on with me physically.

Sometimes, I’ll catch myself in a mirror or see a photo of me and be aghast at how bent over I’ve allowed myself to become. Or, I’ll meditate, “check in” with myself physically, and suddenly become aware of a world of pain that I’ve been completely ignoring.

Obviously, this sounds like a contradiction: I’m telling you that I successfully background my pain and now I’m telling you that’s not always a good thing. It’s a tricky balance to find.

Ultimately, I try to compartmentalize my pain, to not afford it too much of my attention, but to also not forget that pain is there for a reason, it’s a signal.

Oftentimes, when I do tune in to my body and feel what’s really going on, the first thing I do is to begin to stretch all of those areas where I can feel the pain and stiffness that I’ve been ignoring. When working, or if I’m sitting for long periods of time, I try and get up, stretch, and move around.

The better you get at backgrounding your pain, the better you need to be at programming check-ins and stretches into your daily routines. For many of us with chronic pain and resulting limitations, exercise can be difficult (and painful). But, the minimum you should program into your daily activities is regular stretching (as best you can) and walking (if you’re able).
The Fight To Remain Upright

I was first diagnosed with Ankylosing Spondylitis (AS) when I was 18 years old. When the doctor came in to tell me that I had the genetic markers (HLA-B27) that indicated this was the type of arthritis I had, he handed me a pamphlet.

The title read: Ankylosing Spondylitis: The Fight to Remain Upright. I snickered, looked up at him, and said, incredulously: “Gee, do you think this could be any more melodramatic?” Little did my naive teen self know just how perfectly accurate that statement was. AS is literally a lifelong fight to remain upright.

Here is the cruel cybernetics of how this works: your spine starts to hurt. You bend over just a bit and that alleviates the pain. Soon, this position begins to hurt, too. So, you bend over just a little more. Then, the pain arrives in that position and begins to torment you. You bend forward a tiny bit to alleviate it.

And on and on it goes as you bend further and further over, trying to outrun your pain. The only way to help slow this progression is to literally push back against it. You have to constantly create pain for yourself to prevent yourself from ending up at a right angle.

I have not won this fight by any means, but I push on. I am bent forward, but it is not nearly as severe as it could be. For years, I was vigilant, always trying to put backward pressure on my spine. But ultimately, the fight is exhausting. And painful.

It’s important to do what you can and not beat yourself up over lost battles in this life-long war. The good news for those who suffer from various forms of arthritis is that there are now bio-engineered drugs (biologics) that work wonders. The progression of my disease has slowed dramatically over the past few decades.
Laughter Is Great Medicine

I wouldn’t go so far as to say it’s the best medicine (for me, that would be the drugs I inject every month), but laughter is definitely a key ingredient in coming to terms with chronic pain.

Patch Adams liked to say “Good health is a laughing matter,” and I wholeheartedly agree. Having a sense of humor about it all, laughing on a regular basis, and seriously losing oneself in laughter at least once in a while are all prescribed to chronic sufferers. It may sound… well, silly, but it isn’t. Just like exercise, laughing releases endorphins.

If you’re skeptical, try this experiment. Watch a movie you find seriously funny or a stand-up comic; lose yourself in it. Afterward, see how you’re feeling physically. You may be surprised at the relief and release you feel… if only for a short while.
Time for Your Prescription

Obviously, I’m not a doctor. These are only the things that have worked for me over the course of my 50-plus years living with daily, chronic pain. Your mileage may vary. But here is a recap of the things I hope you’ll take away from this piece and consider trying yourself.
You are not your disease

Having to accept a diagnosis you know is going to mean long-term, even a lifetime of, pain can be extremely difficult. Especially in the early days, it’s easy to become overwhelmed and consumed by it. I was. This is an extraordinarily difficult thing to overcome, but it can be done.

This is the hand we were dealt—the “design constraints” we have to work with. This may sound corny to some, but I’ve come to believe that all of us in life are given what we’re given. It is our job in living to try and make the most beautiful, meaningful, and impactful “composition” we can with the tools and materials we’ve been given. I try to see my arthritis as just one of the materials/design constraints I have to work with.
Your attitude IS important

Anyone experiencing chronic pain knows that how they’re feeling mentally and emotionally influences how they experience pain. You didn’t ask for this hand, but it’s the one that got dealt. How you play it has a lot to do with how you have your head in the game.
Become a student of your pain

It can be extremely helpful in your pain management if you know as much about it as possible, from the physiology of what’s going on to the mental and emotional reactions you have to it. Become an active technician in understanding how your pain works and what actions alleviate it. Consider trying meditation as a way of having more focus and control over your body, your mind, and your emotions.
Immerse yourself in activities that are greater than your suffering

This, to me, was the key to my climbing out of the hole I found myself in. Being given a license to lose myself in life’s great joys as a way of managing my suffering was a revelation. For years, I danced on a regular basis. Having severe spinal arthritis and still being able to lose myself in music, movement, and rhythm on the dance floor is a joy I cannot begin to describe.
Good health IS a laughing matter

Laughter actually is medicine. Make sure to indulge yourself in it as much as you can. It not only biochemically helps to alleviate pain, but it also lightens your mood, improves your attitude, and makes you more pleasant to be around. There is lots of win in laughter.
Learn how to background your pain

All of these techniques help in pain management because they allow you to compartmentalize it, to put it into a great perspective. Make your life and life experiences greater than your suffering and your pain will be diminished.
Note To Loved Ones and Caregivers

You cannot see or experience the pain of another. Besides a wince or a grunt or an obviously struggling body, everything you know about another’s pain is told to you by that person. Listen to them. Believe them. Always.

It can be tempting to judge and to think things like: “They don’t look like they’re in pain.” “They said they weren’t feeling well earlier, and now they’re going out to a party?” You are not in their body, you don’t know what they’re experiencing. And you never will.

They need the freedom to cope on their own terms. Your role is to love and support them and to trust that they know more about what’s going on with their body, their own suffering, than you do.
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