A friend posted on my page that it would be great to get doctors, and other non-believers (friends, families, politicians) to have to wear a ‘chronic pain suit’ to help them understand the kinds of lives we live. The physical experiences, the daily pain that envelop our lives. The choices we have, and the choices that are taken away. But always, always the all-encompassing pain that we have no choice but to define our lives by.
So I thought about what my ‘chronic pain suit’ would look like, feel like. And I think all my doctors should have to wear it for a week. And even more importantly, policy makers, such as Dr Jane Ballantyne, who is at the leading edge of chronic pain research, but who has got it so very, very wrong with her ‘pain acceptance therapy’ model, SHE should wear this suit. Just for a week. And then tell me that she wouldn’t want opioids to reduce her pain a little, and improve her quality of life, just a little. And then tell me that the severity of pain is the wrong metric.
So here goes, Dr Ballantyne, this one’s for you:
First, she must wear my special gloves. They get inflated so that she will have decreased sensation in her fingers, she won’t have full movement or be able to grip smaller objects because she won’t be able to make a fist, AND they will be lined with little cactus needles, so it will feel like she has permanent pins and needles, as I do. I’m not sure how to simulate the deep finger and wrist aches, but I think weighting the gloves with 2kg weights each should get quite heavy, tiring and painful by the end of the day. Not even close to what my hands feel like, but it will have to do.
She’ll have to wear goggles that blur her vision from time to time…programmed so that she’ll never know when it will happen, and she might be stuck somewhere unable to see properly. When she has the blurred vision, she won’t be able to drive herself home. She won’t know how long it will last, she’ll just have to wait it out. The goggles will also give her a headache, with a bit of luck. Low grade, but always there. Enough to interfere with cognition. Enough to impact her quality of life.
She’ll wear earphones that muffle her hearing but also simulate tinnitus, so she’ll have a constant ringing and hissing in her ears. She will have to concentrate hard in one on one conversations and she won’t be able to hear at all if there’s background noise. The constant noise and sustained concentration should add to her fatigue, and interfere with her ability to do her job properly.
She will wear a belt that’s hooked up to an electric zapper, and over the course of the day, at random intervals, she’ll be zapped with a charge so painful that it brings tears. That charge will travel right down her leg, and sometimes her leg will buckle, and she might fall and hit the ground hard. Sewn into the belt will be a sharp pin that will stick into her spine…nothing like the deep, penetrating pain I have that feels like a knife lodged in my lumbar constantly, but I guess I can’t really stab her, and I don’t know how to simulate that. The pin should be unpleasant enough though?
I don’t know how to make hips ache, but again, perhaps more weights attached to her hips, so that each step feels like walking through chest deep mud, and is utterly exhausting. Maybe some sharp pins on the inside of the suit over her hips, so that if she walks normally she gets stabbed, so she’ll have to find a way to walk where they won’t stab her, which will cause fatigue and muscle strain on other parts of her body. And sometimes she’ll forget and still get jabbed with the pin.
Now for her knees…I’d like to say we’ll inject battery acid in there, but that might do actual damage. Probably not appropriate…probably. Maybe just bind her knees so they won’t bend properly, and more leg weights there, so its arduous work to lift her leg at all. And then demand that she walk up and down several flights of stairs…maybe once an hour? Hope she’s fit…
And now for the feet. Easy. I’ll line her shoes with big marbles that she must walk on AND have a few sharp-edged stones in there as well. More cactus needles, because that pins and needles feeling never goes away, and maybe the odd electric shock that travels right up her leg when she puts her foot down wrong. The shoes will of course be two sizes too small, and they will squeeze her feet tight from the outside. Again, I can’t simulate the deep, internal aches that come with inflammatory arthritis, but this is the best I can do.
That’s a start, but doesn’t quite cut it. She might not be fatigued enough, the pain might not be enough to induce nausea and vomiting, and, of course, she can take that suit off at night, whereas I can’t. I seize up overnight and can’t even roll over in bed. I have the hell of trying to move again in the morning, pain is always the first thing I feel, the first sensation of any day. She will get respite. I will stipulate that she must sleep lying on her back, she’s not allowed to move, else she gets zapped with a charge of severe pain. See how rested she feels in the morning after that! And still, I believe she wouldn’t last the week. She would be begging for pain medication by the end of the first day. Sooner if no one was looking!
Oh, and I almost forgot…she can eat nothing but rice and select fruit and vegetables and a little chicken for the whole week. No cheating, else she gets a slug of that syrup that makes you vomit AND a belt tied around her stomach so tight it hurts and she can’t breathe properly, for four hours at least. And for six days out of the seven, her food will be laced with varying doses of laxatives so that she has constant diarrhea, but some days will be manageable, and others will be explosive. There will be one day of respite, but she won’t know when that might be, and she won’t know which days she’ll be housebound because she needs a toilet every half hour or which days she will be able to get out and maybe manage the grocery shopping.
Good luck, Dr. I hope my ‘chronic pain suit’ gives you some idea of what my life is like, and changes your views on opioids, and their place in a multi-disciplinary pain management strategy. I hope you enjoy your week, and trying to accept the pain you experience. But there is no way to truly simulate the pain and disability I suffer, because at all times you know that you can just take the suit off. At all times, you know this pain will end. You can even decide to end the experiment and take all of that pain and discomfort and disability away. And I? I cannot. And I never will be able to.
My opioids give me a small measure of relief. Enough so that I can manage, but I know I will never, ever be pain free. Denying me any kind of relief is nothing short of cruelty, and for a doctor to advocate for this is ignorant, arrogant and a betrayal of the trust people who live with chronic pain place in the medical profession.
“It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. “