I’ve been deeply upset about an article going around about the UHC shooter, which suggests Luigi Mangioni was radicalized by pain. The article gives no evidence, and makes no convincing argument. It expects you to look at the negative space: because Luigi “had options”, and “could have been almost anything he wanted to be”, you are expected to believe that he turned to murder because of pain. He had a degree and a “promising early employment history”, showing yet again how society believes the only valuable thing a person can do is grind for capitalism.
Chronic pain doesn’t radicalize. Chronic pain saps you. It is a constant, permanent, and incessant drain on your ability to do even the simplest of tasks. Did he have options? Could he be almost anything he wanted to be? When chronic pain conspires every moment to prevent you from moving forward, from taking action, often from even properly caring for yourself?
No, chronic pain doesn’t radicalize. Chronic pain gives you clarity. Chronic pain shows the world for what it truly is: a society that doesn’t care about you if you can’t hold a job, and paradoxically, believes that you are just fine if you can. People around you tell you it’s in your head, that the reason you aren’t getting better is because you are so pessimistic, that you aren’t willing to try some bullshit thing they just thought up. They can’t even conceptualize that you may have tried it, or know yourself well enough to understand that something won’t work. Then they drift away, and suddenly you have less friends than you once did.
Chronic pain shows you that medicine, as a field, is based on statistics and bell curves. If you don’t land in the center of one of those bell curves, it doesn’t matter how much access you have to doctors and treatment, eventually everyone discharges you with a shrug and a sorry, if you are lucky. It shows you that doctors, even the ones who purport to care, have a limited toolbox and when you aren’t a nail to their hammer, they pass you onto the next specialist.
Chronic pain also shows you the cold calculus that’s involved with cost of treatment. Your time with doctors is limited. Your access to surgery is limited. Success is measured not in diagnosis or resolution, but estimated percentage of improvement. Oh, your pain is 50% better? Success! It doesn’t matter that you are still in pain 80% of your waking hours, that it’s been a decade since you had a single day without pain.
And ironically, little of this is about money. You might think it is, and sometimes that’s true; but even in a situation where money isn’t an issue, such as a single payer system like Canada, the system will fail you. Because again, medicine is about statistics, and gatekeepers who validate the cost of drugs or a doctor’s time against their judgement about whether or not you can hold down a job. If you can work, you are fucked. If you can’t work, you are even more fucked.
Welcome to modern medicine.
I’ve never shared my pain journey before, but since Luigi Mangioni has forced the conversation about chronic pain into the spotlight, I felt it was time. This is going to be long, and for that I apologize. I’m going to be thorough, and the only things I will leave out are the pieces that are too personal. I’m also going to go on faith that sharing this won’t sabotage my future job prospects… but rest assured, employers, I’m not so disabled that I can’t still grind for capitalism. After all, without sacrificing my daylight hours for a paycheck, I also wouldn’t have health insurance to cover the meds that allow me any quality of life at all.
My journey has been long and is ongoing, and making this post is one more step towards the acceptance that has been the single greatest improvement to my quality of life. But I’ll get to that.
It’s 2010, and I’ve just gotten married. I am 31 years old. My wife and I spent two weeks on a mediterranean cruise. There were a lot of tours, and a lot of walking, even some hiking. It was one of the best times of my life. But not long after we returned home, I found that it hurt to walk around. My right foot ached regularly, and would often give me spikes of pain. I assumed that I’d hurt something on my honeymoon, and I assumed it would improve. It didn’t.
I go to my family doctor, who is the one ray of sunshine in this story, and I credit her with every improvement I have made. She’s one of the few doctors who truly seems to care, and when the system eventually forces her to give up her practice, it’s going to be a bad day for me. But until that day, she remains an excellent source of the very best referrals, to the very best doctors. But each step of this story has a long turnaround; referrals in southern Ontario tend to result in an appointments which are between two months and a year in the future. Which means each step of a long process like mine is… well, longer.
She sends me for blood tests, x-rays, basic tests. Nothing shows up. She sends me to a podiatrist. A few months later I get my gait checked, my feet looked at, my symptoms examined. I have flat feet, a weird gait, and orthitics will solve my problems, I’m told. I put it through my insurance, and a few months later I have uncomfortable shoe inserts. A few months after that, there’s been no improvement; in fact I’ve gotten worse.
It’s mid-2011 now, give or take. I’ve spent my first year in regular pain. I’ve also been sent for a bone scan and a foot MRI. No scans show any problems.
I go back to my doctor, because now I have a new symptom. A few of my toes have discolored. Seems bad. She looks at my foot, pokes and prods, and decides that I likely need to see a rheumatologist. She puts in a referral to one of the few rhuematologists in the city. It’s a six month wait for an appointment. I limp on.
It’s early 2012. I’m almost 32 years old. I can barely walk for the first hour of every morning. If I have to get up in the middle of the night to pee, it’s a struggle to get to the washroom and back to bed.
I get to my rheumatologist appointment. I’m surrounded by octogenarians with walkers. They seem as confused as I am that I’m there. I go into the examination room, and the doctor directs me to take my shoe and sock off. He looks at my foot and my discolored toes, laughs, and says “Where’s your psoriasis?” Surprised and shocked, I tell him that I have a tiny patch above my ear that’s never been a major issue for me. “You have psoriatic arthritis,” he says. He follows up with “How good is your insurance?”
I am deeply lucky to be married to a unionized government worker with one of the best health insurance plans you can get. I am not sure where this story would have gone, were it not the case. Certainly nowhere good. I say this because I need you to understand that chronic pain is not solved by having money, or having great insurance, or having access to the best doctors. Do they help? Yes. Can they fix you? For too many of us, the answer is no.
The doctor goes on to tell me that the treatment I need is known as a biologic; it is advanced. It is expensive (at the time, to the tune of $2500 per month). It is most of all effective. But my insurance will not cover it until he proves to them that no other “established treatments” work. Psoriatic arthritis is an autoimmune condition (shout out to the ten people who still mask in doctor’s offices!), and all treatment involves supressing your immune system. To qualify for any biologics coverage, you have to spend months on strong NSAIDs, and then when those don’t work (and I mean when – they are only effective in something like single digit percentages of cases), you have to spend months on chemotherapy meds. Yes, chemotherapy meds. They work slightly more often.
After a few months of NSAIDs, which didn’t work, I’m back at the doctor. I have trouble walking most days; I’m putting on weight because it turns out any attempt at cardiovascular exercise uses your feet. I ask about getting an accessible parking permit. I am given a prescription for methotrexate in pills form.
This leads to one of the lowest points of my life.
I am nauseated all the time. From the moment I wake up to the moment I go to sleep. Walking is a nightmare; but when I make use of my accessible parking permit, people who only see a healthy man walking around stare daggers at me. I feel guilty for taking a space that might be needed by someone who is worse off. By the way I can’t sit down at all; my tailbone is being attacked by my arthritis and it is agony to transition to or from sitting, or to sit in the wrong position.
Months later I am back at the rheumatologist; but I haven’t been on methotrexate for long enough yet, insurance companies demand more suffering. I get a new prescription, and am taught how to self-inject with liquid. I now have to inject myself with poison once a week. I am never less nauseated. I develop an extreme aversion to needles; as soon as I even think about getting them I am ready to throw up. I never do. Maybe it’s a psychosomatic response to the methotrexate making me ill; but does it matter?
It’s now late 2012. I have finally jumped through all the hoops. I expect to be given a prescription for my new meds, but no. That’s not how these ones work. They can only be dispensed from one pharmacy, and they can only be delivered to my home address, as they have to be refrigerated. This is the first time I start to realize that chronic illness will have external costs; I now have to take a vacation day once per month in order to receive delivery of my medication. That’s 12 per year. My job at the time doesn’t hold it against me, and lets me work remotely instead.
I am told that it can take a few months for the medication to become fully effective, but this isn’t true; within two weeks I am so much improved that it’s like whiplash. Sure, my foot still hurts for a half hour in the morning, and I have weird side effects from the medication that my rheumatologist tells me is all in my head, but after two years of moderate to severe disability, it’s like getting a second lease on life.
It’s now 2013. I’ve lost a ton of weight; I’m the lightest I’ve been in my adult life. I’m active again, I’m back to being social. I am fully enjoying myself. I get a guitar in december; I’m finally going to learn an instrument. Mid 2014 my hands start to hurt.
This is the first time I have the experience of being told I am fine when clearly something is wrong. The rheumatologist examines me, and says there’s nothing wrong. My blood tests show no inflamation; the pain “must be mechanical”. A phrase that is never explained to me, but I understand to mean “something that cannot be solved.” This is incorrect, but we’ll get to that. The important thing, according to the doctor, is that my medication is still working. At this point I am considered a maintenance patient; I only get to see my rheumatologist once every six months. Doctors in Ontario are paid by amount of patients they can see in a day. Every visit he barely listens to me and rushes me out of his office.
It’s now early 2015. I’m 35 years old. I’m putting on weight. My hands hurt so bad, so often, that I’m taking more and more sick days from work. I call them work from home days, but I do very little actual work. I’m good enough at what I do that it’s often easy to make up time, but I’m starting to worry about my livelihood. As a game developer and programmer, 90% of my work day is typing. If my hands cease functioning, so does my paycheck. I live in Toronto. This is not an option. I put on a brave face and struggle through my work days.
When I look back, it was at this point where depression truly started to take hold. My hands hurt so often that I barely play guitar anymore. I thought it was because of the pain that I wasn’t enjoying it; but it was more likely the depression.
At my maintenance appointment, the rheumatologist gives in to my complaints and sends me to a doctor that has specialized equipment for hand ultrasounds. He claims this guy is one of the best in his field. Months later I get my appointment for the scans; they show nothing. Months after that I am once again told nothing is wrong. But my social life suffers. I don’t want to leave the house. I can’t enjoy any hobbies. They all use my hands. My back has started to hurt, but I am told “it is just mechanical”. I ask about physiotherapy; I am told that the entire vocation is a scam and not to waste my money.
I believe him because this man delivered me from the worst part of my life, so far, into the best part of my life. Would he mislead me?
I make an appointment with my family doctor. She actually listens to me. I get sent to a well regarded hand surgeon in Toronto to examine my hands; when I get there, he’s just confused. The people around me can’t use their hands at all; they are recovering from major trauma or other serious problems. In a nearby examination room I can hear a teen sobbing while the doctor tells him he’s not going to play baseball again; I remind myself that I don’t have it so bad. I feel guilty. I’m only experiencing some pain; these people’s lives have been ruined and I’m taking up a resource that might help them. The doctor examines my hands and says they are physically fine. The hand clinic specializes in nerve and soft tissue damage. I have none of that.
It’s early 2016 and my foot is starting to hurt again. In fact, this time it’s both feet. They got so bad so fast that my doctor switches me to a different medication. I will have to be off my current meds for two months before I can start the new meds. Though my hands don’t hurt as much anymore. I also made the decision to quit my job. I don’t connect these two facts until many many years later.
It’s mid 2016. I’m in the UK with my wife and some of our friends. I should be having the time of my life, instead I’m finding places I can sit down while trying to convince everyone to leave me behind. It’s okay. I don’t mind. I don’t want to ruin your experience. I just want to enjoy a leisurely coffee and muffin. I feel guilty for being a drag on three healthy adults. I am embarrassed and ashamed for needing to inject myself with medication in our airbnb. I make jokes about shooting $400 into my leg in the bathroom.
When I get back from my trip, I quit my job, and go back to an old job. This is where I learn that when you switch insurance, insurance companies don’t give a shit that you have a prescription; they demand you jump through a thousand hoops to qualify again. If you’ve never heard the phrase “prior authorization”, I am jealous. This is my first experience with it; naive as I was, I believed that after suffering for half a year on chemo meds, I wouldn’t have to fight to have my proper meds covered.
It’s mid 2017. My feet are more often okay than not, and my hands are usually fine. My back hurts more often than not. It has now been years of never having a single pain free day. So much happened in a haze of pain after this point, that it’s hard to keep things straight. I am scheduled for an MRI; the machines run 24/7. My appointment was for 5am in the dead of winter. I am referred to two pain clinics. The first pain clinic to get me an appointment only talks about drug therapies. I pass.
It’s early 2018. I lose the ability to sit down without pain unless I sit perfectly and rigidly upright. I can no longer sit through a movie or commute to work without significant pain. I return to my doctor, and she refers me to a physiatrist who runs his own sports medicine clinic that focuses on solving back pain. The same place offers physiotherapy, so she directs me to start that until my appointment with the physiatrist comes through.
The physiotherapy helps to an extent; I clearly have a slightly bulging disc and well regarded therapies help fix it. This solves a significant portion of my pain, and teaches me that “mechanical pain” means pain related to joints, and my current rheumatologist is a hack. I ask for a referral to a different rheumatologist. My family doctor comes through with an amazing doctor. Suddenly I have another doctor that listens to me, who helps guide me through what is and isn’t part of my genetic condition.
This guidance helps me commit fully to physiotherapy, but it doesn’t solve the majority of my back pain, and doesn’t address a more concerning symptom that’s been developing: lower extremity numbness. My physiotherapist tells me that if at any point I have numbness in my groin, I should see my doctor, as it could be a sign of a very dangerous complication.
In September 2018 this happens. It is the lowest point of my life. I start having regular emotional breakdowns wondering if I’m going to end up being a paraplegic, if I’m going to lose the ability to get to my own bedroom, or drive a car. I go to the doctor and she sends me for an emergency MRI. I spend 16 hours in the hospital, in agony, due to not having appropriate seating or an ability to stretch/lay down. I miss my favorite band who is in town, who were going to crash at my place. I am discharged with the ‘good’ news: the scan didn’t show anything worrying.
I get my appointment with the physiatrist, and he directs me to start customized exercise classes they run which are focused on helping solve back pain issues. He also suggests I see their resident osteopaths who are specialized in back pain issues. He says their success rate at treating back pain is 95%. I do all of this, and while it helps a little overall, I always plateau at a level of pain that disrupts my ability to live my life. I am one of their 5% failure cases.
It’s now early 2019. I turn 40 years old. My 30s have been lost. I cannot imagine the hell of living another 30 or 40 years. My greatest fear changes from being dunked in a pile of spiders to living too long.
My referral to the the other pain clinic comes through. This is the first time I feel like maybe I will find a diagnosis, and maybe even a solution. He has a team. They start me on additional customized physiotherapy, while starting the process of planning for a surgical procedure meant to burn off the nerves near the spine, to deaden their pain responses. A facet rhizotomy if you want to look it up. I’m maintaining my exercises from the physiatrist, and continuing the classes out of pocket, in a hope that enough physical effort might give me relief. It never really does.
Eventually I have the procedure. They have to do it while I am awake, so they put me on fentanyl. I understand the appeal; I can feel all the pain but it doesn’t matter to me. Nothing matters to me. During the procedure I casually ask if it should feel like hot lava is running down my back. They up my dosage.
After the procedure I have two of the best days of the past ten years. I have no pain at all. None. It’s a wild improvement. I convince myself that it finally worked, I can get back to living my life. Then it all just creeps back. In my follow up appointment I tell the pain doctor that while the procedure helped with a significant portion of the pain, the worst of it, the times when bending causes me to feel like I’ve been knifed, it hasn’t changed the majority of my daily chronic pain. He asks me to estimate the percentage improvement. I tell him 50%.
He considers this a wild success. I just feel defeated. He tells met that the best thing I can do is just learn to live with it. I don’t really understand what he means yet.
It’s late 2019, and I haven’t seen any of my family since 2016. Sitting in a car for an hour is the limit of my tolerance. I am convinced that sitting on a plane for four hours might kill me. When I go out to hang out with friends, the effort leaves me absolutely destroyed for days.
Work stress ramps up and my hands start to hurt again. I still don’t make the connection. My family doctor, who has never stopped advocating for me and trying to help me out, gets me in with a major rehab institute. At my first appointment I am put on cymbalta to help with the pain. I get a lot of awful side effects and not much else. Maybe it helps a bit with the depression. It doesn’t let me life my life though.
Spring 2020 and covid hits, and on top of my issues, I now have to worry about the fact that I am immunosuppressed while pictures of body bags pile up on the news. I tell my boss at work I’m not going to come into the office anymore. He says he’ll have to get approval. I tell him that I don’t care if it’s approved or not. Two days later everyone is forced into lockdown anyway. All my appointments at rehab are cancelled.
Work from home in early covid was both a boon and a bane. I didn’t have an ergonomic setup at home. I didn’t have the sit-stand desk I browbeat work into getting for me. Sitting in an ikea chair all day really exacerbates my pain issues. I keep up with exercises for a while, but don’t see the point. They aren’t improving things, and the pain from doing the exercises is worse than the level of pain I have normally. I’m also developing severe hip pain that prevents me from sleeping. I stop the exercises.
I start experimenting with cannabis; it gives me real relief in the evenings, and helps me sleep through the night. It does significantly more for my pain than any pain meds I’ve been given. I am deeply thankful that it’s legal, it doesn’t solve anything, but it does allow me some much needed respite.
In summer 2021 I quit my job and take a new one. It’s full remote, so I won’t be forced back into an office, and it pays well enough that I can upgrade my working space to have better ergonomics. It also brings another prior authorization fight with insurance. It takes about four months. Towards fall my physical condition has degraded significantly and I’m terrified that my continual bouts of sick days due to pain will cost me my job. I wake up every morning in pain. I can’t sleep through the night anymore. I risk a visit to my doctor, despite the successive waves of covid.
She has never flagged through all of this. She says she believes that cognitive behavioral therapy, as well as mindfulness and meditation courses may help me through this. I am skeptical but I am desperate to try anything, find anything that will help me. This is where my life starts to turn around.
I want to take a quick break from my pain journey here, to talk about something else. I know this has been long, and if you’ve gotten this far, I assume you are a friend, or one of those rare individuals who truly cares about the plight of others. Thank you for reading.
I’ve written this to be as exhaustive as possible so that you can understand that when I say I tried everything, that you know I have. When I say that I’ve put everything into trying to get better, every single drop of willpower and energy I had, you’ll believe me. I’m a rational person, skeptical of so much. I need evidence, I need proof, I need studies and specialists willing to back them up. I don’t take anything on faith. I understand the placebo effect and I won’t fight it, but also I am rarely lucky enough to experience it.
We are taught and conditioned to believe that doctors can fix you. Television shows, books, movies, a childhood of visiting the doctor and being given something and then getting better. It reinforces that belief. We mix this information with the surface level knowledge that we gather in school, and it calcifies to this single false idea that doctors can actually tell what’s going on in your body. For so many of us chronic pain sufferers, that’s not the case.
But there’s also real evidence that certain things which are not considered medicine can have true, clinically proven, positive impact when treating chronic pain. Much of this is rooted in the fact that even many doctors misunderstand the mechanics of pain, but even if they don’t, they believe that everything has a cause, and if something has a cause it can be fixed. This is also often not true.
The reason I’ve pointed out that I had good insurance, that I had access to some of the best doctors and treatments, is to point out that the failure of medical systems is not just one of money, but one of tunnel vision. If a doctor believes they can fix you, then you believe they can fix you. But you don’t know they can’t until you get the time with them. False hope is worse than no hope, because false hope prevents you from reaching a point of acceptance.
In winter 2021, I start both cognitive behavioral therapy and a course on mindfulness and meditation at the same time. It’s a one-two punch that helps me understand both the true mechanics of pain, and the actual impact of controlling your thoughts.
I learn that the biggest predictor of chronic pain in two people recovering from similar injuries, or with similar arthritic xrays, is chronic stress. Chronic stress is more likely in people who had a rough childhood or who deal with money pressures (I grew up poor in a broken and abusive home). I learn the connection between stress and pain response, and that the true mechanism of pain is a chemical signal that your brain self-reinforces. When you feel and focus on pain, you feel even more pain.
Cognitive behavioral therapy helps me reduce my stress levels; my pain begins to drop in response. Meditation and mindfulness helps me train my brain to not focus on the pain; after a few weeks of this, I start waking up without pain in the morning for the first time in well over six months. I start practicing hatha yoga, and find that it brings me a greater body awareness that helps me learn to move in ways that don’t hurt.
When I meditate, all pain leaves me. It is the first time in ten years that I have a way of taking the pain away on demand. It comes back when I stop, but always a little bit less than it was. I am thankful for any improvement I can control. I am calmer, happier, less angry. I can think about the future again without panic and fear.
In winter 2022, the rehab institute calls me back to restart my therapies. I find it somewhat helpful, a few new exercises and stretches help me reduce some specific pain. The doctor is convinced there is a problem, and that he can fix it. He is dismissive of my explanation of how meditation has helped me. He says it’s all in my head. In a way, he’s right, but not in the way he thinks. Eventually I am discharged without any solution or diagnosis, as I expected.
My work changes insurance providers and it takes me 4 months to get prior authorization for the medication that’s necessary for the one condition I am actively diagnosed with.
Which brings me roughly to now. I often wonder if meditation is actually doing anything. I’ll fall off from practicing, and then find that I wake up in pain. I get back to regular meditation, and I wake up without.
I still have plenty of bad days, they come and go in waves. I know now to examine what stressors I may be experiencing, and addressing them often improves my pain levels. I still can’t live the life I want to live, but I’m slowly making peace with the life I have. Suffering is part of humanity. Accepting your life for what it is allows you to find joy where you can.
Did pain radicalize me? I am where I am, and I believe what I believe, despite the pain. If there was a radicalization element, it’s in the fact that the medical system deals in false hope and empty promises, while ignoring and deriding things that are proven, if you care to look for the evidence.
Medical practitioners pass you incessantly to the next one. At ever greater cost; even if it doesn’t cost money, it costs time. Even if it doesn’t cost time, it costs well-being. Every office makes you the same promise: just a little bit further. Before you know it you’ve lost a decade without improvement. Time you’ll never get back. None of which is to say that I gained nothing from these practitioners. I learned effective and safe core strengthening exercises. I had a procedure that did remove some of my most crippling pain. I did have a known genetic condition diagnosed and treated.
If there’s radicalization, it’s that a new job with new health insurance brings me a new fresh hell – I now have to apply for prior authorization yearly. A process that has never taken less than 3-4 months. I was forced onto generic medication, which is still prohibitively expensive but slightly cheaper to the insurance companies. Absurdly, pharma companies are fundamentally more human than insurers; when my insurance won’t pay for months while I apply for prior authorization… the drug company just comps the meds. Wild.
If there’s radicalization, it’s that chronic illness is actively ignored by a society that won’t even mask to protect the vulnerable, and that same society will pretend you are perfectly healthy if you can hold a job. I struggle with what is likely undiagnosed ADHD; but because I can hold down a job, I am ineligible for testing unless I pay thousands of dollars out of pocket. That neurodivergence likely contributes to my stress levels, which contributes to my pain levels.
If there’s radicalization, it’s that there are so many chronic conditions out there that are barely recognized, and even if they are, it can be nearly impossible to find a doctor who can diagnose you with them.
If there’s radicalization, it’s that chronic illness forces you to be your own advocate, to do your own research, to fight, constantly, to have even cursory acceptance from the people on your periphery, let alone convince a doctor that you have a problem.
If there’s radicalization, it’s that many of the things which have brought me the greatest improvements are ignored by so many doctors, and derided by society at large. Cannabis, yoga, therapy, meditation.
So you tell me, does pain radicalize?
If you’ve reached this point, thank you. If you know me, I’m not looking for any kind of sympathy. I have found a way to live with my conditions. If you don’t know me, I only ask that you look upon people who suffer chronic illness and chronic pain with compassion and understanding. Don’t assume you know what they are going through, because until you’ve been there, you never can.
And when you ask how someone is doing, don’t be shocked if they tell you.