Originally published at: How I've dealt with a lifetime of chronic pain | Boing Boing
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Thanks for this piece, Gareth. It made me think of my father’s last year’s, when his wonderful cancer survivorship doctor also prescribed mindfulness exercises and laughter as ways to cope with the pain and malaise. At an advanced age and with a bad comorbid case of “just world syndrome”, it was tough for him to carry it out. When he could manage it, though, it made a huge difference.
I took a lesson away informally at the time, and your article crystalises a lot of it.
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Well written, thanks for writing and sharing it. It’d be awesome if our healthcare system facilitated watching sunsets, making love, dancing and reading great books. One of my favorite pieces of research is how being able to look out a window and see nature helped people recovering from surgery. View through a window may influence recovery from surgery | Science
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You Are Not Your Disease
This, more than any other path forward is how you start to win back the life you want to create. The identity of this future self is a road-map, the stepping stones are the daily victories, no matter the size of those victories, progress becomes the drug you crave. Thank you Gareth, when you hear someone else find the/a way through, it lessens the blight of going it alone.
Don’t give up on the person you’re becoming
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Beautiful essay, thank you, Gareth!
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Thanks for sharing this. As someone whose partner experiences life-long chronic pain, I found this piece both resonates with our discussions about her experiences, and provides some new potential avenues for re-framing our discussions and her experiences with pain.
My partner is reaching a point in her journey where she’s actively navigating the “You are not your disease” question, and is trying to find meaningful activities, interests, and identities (in short, trying to find ways to answer the inevitable party/meet-the-family question of “So, what do you do?”) that don’t center her disability or her treatment. The track she envisioned for her life was completely derailed by her condition, and so this work is especially difficult. Thanks for sharing some things that may help.
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I’m bookmarking your article because it’s a more concise and eloquent version of what I’ve been telling people who ask how I deal with diseases that cause chronic pain.
Know your body, know what is good for it and bad for it. Know your head, likewise, and then figure out which of your joys help both, and do more of that.
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Or the subtle placement of a 70" screen near the bed^wPlace of Ailing and a good rig set up to play Monster Hunter or Outer Beyond or whatever? (Braided pulls, screen at the feet, anyone seen the schematic?)
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I am picking among ‘buy reprints at Medium,’ having a mountable photo rendering on glass, saving the article in case Medium says I’m overlimit, and trying to render it on a major road in chalk or something better, park plaques for when they run out of I Have A Dream ephemera, sharing with GP’s office…and the Onion article making a wild jab at the person I was becoming.
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Thanks, Gareth.
Your article was timely and enlightening. I’ve had to deal with arthritis pain regularly. In fact, I’m having one now. My flares last about four weeks, and generally in my feet - which makes me even more sedentary than normal. Given it’s 2021, I’m shocked there isn’t a magic bullet yet to help those with arthritis eliminate pain…
I abhor the victimhood that accompanies chronic-pain - and feeling sorry for myself I have this damnable disease. With all that said, what you’ve proposed is important - and something I’lll certainly try to use in practice.
Thanks again,
Nick
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This was the same first step for me towards overcoming mental health challenges in adolescence.
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Awesome article.
Long enough to be thorough, short enough to not be tl;dr.
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I was diagnosed with AS in my 30s following a bout of Uveitis (fortunately the eye specialist knew about AS connection) until then I had suffered from pain in my neck, lower back and most major joints – and, virtually unnoticed, some upper vertebrae were fusing together. After various drug treatments we settled with self-administered adalimumab injections every fortnight, combined with regular exercise, this has been successful in reducing further advances in fusing and made the pain into a background thing.
I find if I can exercise or even just walk through the pain it will become insignificant for a while. Sitting still is a problem.
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My best friend had AS, until he died with it. He lived the best life he could. I wish he’d survived to read this article – but I think he’d already figured out much of it for himself.
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Never seen Patch Adams, but after reading the intro, I think I will.
I’ve been in constant pain for decades. As part of the letter I’ll leave for my family when I eventually pass on (due to whatever disease finally wins, unless it’s time itself), I plan to include the phrase “at least now, the pain has passed”. I have any number of wraps, braces, compression thingys, and sometimes they help dull the pain. I’ve learned to live with it. I’ve joked that if there was ever a real “freaky Friday” thing, the first thing the person jumping into my body would have to do is figure out how to deal with the constant 2-3 on a 10 scale pain. There was this one test I took where they tried to find the source of pain that was the worst torture I ever endured. 2 hours of being stuck constantly with a pair of needles and then shocked as they tried to find what nerves were firing so they could treat it. I would have given them my PIN number and anything else they asked it hurt so much. They found nothing.
Gareth, it sounds like your pain is far worse than mine, but I can relate a bit. I’m glad you’ve learned to live with it, rather than…well, not. Long ago I decided that the pain was just going to be another resident of my body. It hangs out with my self-loathing and depression, trying to surface, but most of the time the optimism I keep hidden smacks it around and holds the door shut. Every now and again though, the pain gets really annoying and pushes through. I acknowledge it and move on.
I am not the pain, and I’m glad you’ve learned you aren’t either.
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A friend who was ill talked about hunting Pokemon from his hospital bed, and we thought it interesting that if a decade or so ago if he’d told his doctor he’d been hunting monsters only he could see with his phone, they’d have checked on his meds.
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I am not sure if endometriosis comes under the umbrella of chronic pain or not, as the pain is intermittent, usually around period time or ovulation. But I’ve dealt with that for 24 years. It started when I was 12 and I wasn’t diagnosed until I was 28 or 29. I have exhausted the treatments and I am down to surgeries once every 5-10 years or a hysterectomy, which doesn’t 100% sort it either.
I remember saying to someone that the pain wasn’t actually that bad anymore (I used to throw up from the pain as a teen and sometimes pass out) that person said, “Sweetie, the pain is the same, you’ve gotten used to it.” She was right, I don’t feel it as much anymore, I still feel the nausea and the fatigue. That might sound great but pain has a function. Because of this learnt higher pain threshold I didn’t feel any pain from the DVT I had in my leg until it stretched from my belly button to my calf. I could have easily lost my leg, not to mention my life.
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My biologic (Cosentyx) has been a game-changer for me. When my old biologic stopped working, it took three years for us to find another one that worked. Several times it got so bad, I literally couldn’t get out of bed. One time, I had to call a neighbor (who I barely knew) to help me out of bed. Super awkward.
Re: Sitting
I have found that rocking back and forth a little as I work is a big help. YMMV.
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Yes that is one of the characteristics of Ank. Spond. not only does it migrate around the body it also affects people in different ways and at different levels during the condition. I do try various seated exercises but nothing works as well as standing and movement for me.
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