For the majority of my life, I've struggled with a chronic illness. It's called scoliosis and it's a curve in my spine.
Some of you who are familiar with this illness might be saying: "that's it?" Having a mild scoliosis is actually pretty common, and in mild cases, there are practically no symptoms.
But my scoliosis is severe. The most tilted and least tilted vertebrae make an angle of about 45 degrees. There's also a ton of rotation, which pushes half of my torso forward and half back, and reduces my lung capacity about 30%.
Looks pretty bad in the X-Ray, right? Weirdly enough, it's not super obvious unless I'm wearing a tight shirt or shirtless. You probably didn't notice it, even if you've known me for a while.
For a long time, I had an aversion to talking about my illness. I really dislike the idea of being pitied, and I felt like talking about it would bring me pity. I felt like people would make excuses for me. I don't make excuses for myself, and I didn't want others to, either.
I also think, subconsciously, I didn't want others to see me as weak. I have a sneaking suspicion that other "high performers" with chronic illnesss hide them for similar reasons.
It's kind of weird that I didn't talk about my illness, because if you know me, you know that I'm a very open person. During my unemployment, I got to thinking about it, and I realized that most of these feelings stemmed from insecurity. I cared about how other people viewed me. I didn't care about how other people viewed me, then I wouldn't care if they pitied me, saw me as weak, or strong, or however they chose to see me. I would simply be as I am, and they would perceive me as they would.
The funny thing is, I'm not really insecure at all, and I don't really care what people think about me. But I was insecure when I was younger. Over time, my insecurity faded, but I still didn't talk about my illness. It was just a holdover from the past.
What's it like living with my illness?
The first thing I'd mention is the pain. This pain basically never stops; I can ignore it for periods of time, but it's always there. It's a muscular ache in my back and torso caused by the asymmetry. I'll leave you to imagine how it feels for a part of your body to hurt for your entire life, but it does affect pretty much aspect of my life. When you're in constant pain, easy things become hard to do, fun things become chores, etc.
The pain gets worse if I sit or stand for long periods of time, so I have to interrupt my deep work about every hour or so. As a result, I don't often get into flow state, and when I do, it's quickly disrupted.
The pain affects my sleep, so I have to be in bed for about 9 hours a night to feel rested. Getting in bed feels like gambling, since some days the pain will be much worse than others and I won't sleep well no matter what. The pain can fuck up my sleep for days, which can and does affect my work. I'd explain it away as me being "inconsistent," but I've come to realize that I was not inconsistent, just literally tired.
My illness has stolen things I love from me. I love exercise, but my illness prevents me from doing most exercise, since pretty much any dynamic exercise will, exacerbate muscular asymmetry over time. I liked running and climbing, but I can't do those things anymore. Even basic lifting makes it worse; I can't do anything involving a bar. I'm constantly searching and rotating exercises in search of something that "works," and I don't really enjoy the exercises I'm doing now.
Invite me to go hiking? I'd probably come with, but know that the pain will get bad in the second half. Amusement park? All that standing isn't good for my back, so forgive me if I'm constantly looking for a seat.
When I play a pickup game of basketball, I wake up the next day feeling asymmetric muscle soreness. I play with the understanding that playing is unhealthy. This is a weird reality to wrap your head around. To me, sports are a vice, like alcohol or sugar.
My illness is a huge psychological weight on my shoulders. Physically, I have to bear today's pain. But every ache brings concern about how bad things might be next year. And the year after that. And the year after that.
My illness always gets worse and never gets better. They have a saying in scoliosis treatment: "gravity never sleeps." Muscle asymmetries are exacerbated by everyday life. Every year, the pain gets worse, the asymmetry gets worse, and the disease progresses faster.
Other young people look at longevity progress and become excited about the future. What good is longevity when my healthspan is capped at ~50 years no matter what? No longevity treatment will reverse the macroscopic degeration of my spine.
My illness is poorly understood by modern medicine, and there is no good treatment option. I wore a brace when I was a teen, but there is no way of slowing progress as an adult. The only real treatment option is spinal fusion surgery, where they use a dozen screws and a titanium bar to fix your spine into a line. It's pretty medieval, and you can't bend your spine after they do it, obviously.
I will probably need to get this surgery. If I don't get this surgery, my illness will get 30-50% worse over the next 40 years. However, I probably won't be able to within the next few years due to COVID. It's an ICU surgery, and even urgent surgeries like hip replacements and tumor removals, are still getting rescheduled. I'm near the bottom of the priority list. So that's cool, I have to interrupt whatever I'm working on to have a life changing surgery at a random point in the next 3-7 years.
I'm motivated to spend energy on the things I care about, especially in areas where I'm learning and growing. But even though I care about my illness, spending energy on it is just completely draining. There's no growth involved. Things are constantly getting worse, and I have to expend energy just to slow down the progress. I have spent years running away from my illness, doing the bare minimum.
Introspecting, this is somewhat to do with the chronic nature of it. An acute injury is salient, pressing. The cause is obvious and the fix can be identified. A chronic injury is the opposite. It's insidious. You can't really tell if any specific activity is making things worse or better. It's easy to neglect if there are more pressing things, like work or friends. There's a funny parallel between this and my current work in climate; CO2 emissions have been ignored because they're chronic and have no acute effects.
Why did I write this article? One reason was to make this information public in a way where I didn't have to re-explain it a bunch of times. I've more or less accepted the reality of my illness now, meaning that I'm being upfront when I can or cannot do something, like sports. Hopefully me writing this out is helpful context when I invoke my illness.
Another reason I suppose I wrote this is to create some gratitude in readers. Gratitude has been the most helpful coping mechanism for me, because I know things could be much worse for me. People my age get cancer and literally die. They get into car accidents and lose the ability to walk. It's tempting for me to think about how life would be without my illness and feel really bad about my situation. But gratitude usually pulls me out of these negative thought patterns. Hopefully my situation could be a source of gratitude when you consider your mortality or minor health issues.
I also want to help out others who wonder if their illnesses or weaknesses will impose some sort of "ceiling" on them. They don't.
I think the world would be a bit nicer if we were all upfront about our weaknesses. Super successful people never talk about their personal issues, but I'm pretty sure they all have them. It's convenient that I wrote this before I've really accomplished anything, so I can point at it 10 years from now and say: "Yeah, I was going through all that. And I still did the damn thing."
Finally, returning to the topic of pity; I don't think anything I wrote here should have you feeling bad for me. On a yearly basis, my personal life happiness has been monatonically increasing since 2012, even as my illness has gotten worse. So even though I've written about all of these horrible ways that my illness has affected me, all of these affects haven't crippled me or anything. I'm still thriving. ∎