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The Importance of Escapism from a World of Pain

Managing RA

October 02, 2023

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Photography by Tanya Yatsenko/Getty Images

Photography by Tanya Yatsenko/Getty Images

by Joel Nelson

•••••

Fact Checked by:

Jennifer Chesak, MSJ

•••••

by Joel Nelson

•••••

Fact Checked by:

Jennifer Chesak, MSJ

•••••

Here’s why I treat escapism as seriously as any painkiller and the ways I approach it.

Much of our condition we cannot control — the flares, the disability, the relentless routine of it all. We cannot curate many of our experiences, only manage, sacrifice, and compromise. For me, escapism can be as powerful as any painkiller.

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The world we create for ourselves

As I write this, I am sitting on the riverside at a local country park in my home county of Norfolk, England. Some of you may have heard of the Norfolk Broads or vacationed here — David Bowie even sang about it in the brilliant “Life on Mars.” It’s stunning, but most importantly for me, it’s quiet. It distills the noise pain causes me — a natural antidote for its assault on the senses.

Apart from the squirrels jumping around in the trees that hang sleepily low over my head and the odd delicate hum of a dragonfly wing or distant quack of a mallard, it’s blissfully peaceful. Even the surface of the water effortlessly dances around silently. For these few moments, I am distracted from my pain. Perhaps while reading this paragraph, you were too.

I have intentionally brought myself here today because today, August 21, is my birthday. I’m not well, and lately, my mood has been dropping. My wife is at work, my son is in nursery school, and the empty house on a hot summer’s day is no place for me to wallow. So, I packed a bag and my laptop and headed a few miles west to one of my favorite places. For me, it’s second only to the sea, and at this moment, it’s exactly where I need to be.

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The prison of pain

Pain sucks. It’s a mechanism there to protect us, but when, like me, you are left with permanent neurological pain from a psoriatic arthritis flare that has long since passed, it is like being left in a nightmare that you never wake up from. It is torturous, unrelenting, and all-consuming, and, putting it delicately, on more than one occasion, I have gone to bed hoping I never wake again to face another day.

Learning to live with it has taken me a lifetime. I’ve learned to stop spending all of my energy looking for someone to blame, something to take, a solution — a magic bullet. I’ve tried to process how neurological pathways, damaged nerve endings, muscle memory, and signals in my brain can conspire to create the identical hellish feeling of a flare, all while a scan or X-ray shows zero active disease or inflammation.

I feel like I am on fire every single day, except it’s a fire nobody can see and few believe. I must learn to live with it without medical assistance, overcoming the instinct that all the activities I undertake in daily life, despite the pain, are not causing me any harm. Not physically, at least — the mental damage of that whole experience is an entirely different topic.

It’s a world that can feel like a prison, and for many years, it was for me. I lost everything. I isolated myself, preferring to be angry at the world rather than engaging with it. I became bitter, defeated, and, at times, suicidal.

Of course, the pain was the instigator of this world — the spark that propelled me and my family’s life into an entirely different direction, but in many ways, I was the creator of it. Through anger, fear, and the gut-wrenching feeling of being a passenger while my life was sabotaged, I took the impact of my pain, the ripples of its disruption, and slowly propelled it from a disability into a tidal wave of excuses. It took many years of intensive pain management therapy and disability adjustment training for me to recognize that I was hiding behind my pain.

Understanding your relationship with pain

Ask any pain therapist, and they will tell you the benefits of distraction. It’s a technique that feels foreign initially, and I wasn’t keen to embrace it. I wanted another pill, a quick fix, and failed to see how my initial introduction to pain distraction techniques — which consisted of me placing a piece of chocolate on my tongue, closing my eyes, and “noticing” the taste, texture, and feeling while it slowly melted — could possibly help me in my 24/7 existence with pain. But over time, and as I learned to be more open-minded and try new things, I was hit by a deluge of opportunities I never knew existed to escape my pain.

Distraction, escapism, or however you label it, is not about fixing anything. In my case, you can’t fix the unfixable, and the sooner I realized that and started focusing on how I could give myself an occasional break from it, the easier things became.

“Resilience” is the key word in this conversation. My pain doesn’t really change. My ability to cope with it does — my resilience. A bad night’s sleep, family bereavement, a stressful week at work, or any other life event you can think of — these are all contributing factors to how well-equipped I am (or not!) to manage my pain. As my resilience drops, the perception of my pain level rises. It’s an observation that changed my relationship with pain.

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Escapism in a digital world

Distraction from your pain is more than taking a few moments to enjoy your favorite chocolate treat or to sit by the river in your go-to spot. It’s about immersing yourself in a world you can control for a short time.

It can take countless forms — you don’t have to restrict yourself to one. I write poems and articles such as this. I play my guitar and computer games with others who understand. What better way to get lost than in words, songs, and worlds of your own making?

If you don’t write or play an instrument, then read, get creative, listen to music, paint, walk, play with your dog, listen to the birds, make stories out of what you see in the clouds, play board games — the options are endless in a digital world where the distance to like-minded folks is no longer a barrier.

Whatever you do that involves the creative part of your brain, I promise it will quiet the bit that’s managing your pain signals. And don’t get me wrong, I’m no medical professional or scientist — I’m just a guy who’s lived with pain in some form or another since he was 10 years old, who finds himself on his 39th birthday, still learning, still practicing pain-management techniques, still failing occasionally, and even though today is a bad day, still finding a way to live with the pain.

You don’t need to live with pain alone

Pain management and peer support have had such a positive impact on my ability to cope with pain that I have dedicated my life to advocating for its benefits. This year, I launched a free-to-join Minecraft server built explicitly to serve as a digital world of escapism for those with long-term health conditions.

Fact checked on October 02, 2023

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About the author

Joel Nelson

Joel Nelson is a published writer and international speaker who hosts a podcast, Twitch, and YouTube channel where he facilitates conversations about living with chronic illness and pain. An award-winning patient leader who uses his story to inspire change, Joel shares his experience with chronic illness, pain, and associated mental health challenges to educate and reduce stigma while helping others feel less alone. He has built a growing global community of peer support through his candid, ‘no-filter’ approach. Joel lives in Norfolk, UK, with his wife and young son.

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