On chronic pain
Note: While reading this you may be tempted to give me advice on things to help with chronic pain or wrist problems. Believe me when I say I have almost certainly heard it before, and I am not interested in advice; I simply want to help spread understanding.
I have, since my late teenage years, had chronic pain in both wrists, a result of heavy computer use that started when I was very young. I was fascinated by computers and absolutely determined to become an expert at everything that could be done on them; this drive led me to many spans of overworking as I tried to do everything I could in as short a time as I could. This obsessiveness combined with poor ergonomic practices led to a slow buildup of nerve adhesions and chronic tendinitis.
Nearly everyone experiences pain at some point in their life. A stubbed toe, a broken arm, a headache; during the moment it is difficult to focus on anything else, the pain taking center stage.
Chronic pain is a bit more insidious. It can be just as intense as acute pain, but it never really goes away. The brain gets used to it and adapts, coping with it by learning to ignore it. But this constant need to put it on a shelf takes effort, and that continuous effort is quite a drain on one’s energy.
The constant fight against this energy drain also is subject to other influences that are harder to ignore. There are always dozens of little stimuli that need to be constantly filtered out; background noises, little breezes, too-warm weather, the feeling of hair on your neck, the urge to use the restroom. But the mental effort that it takes to keep these at bay come from the same pool as the effort taken up by managing pain responses. And when that pool gets depleted, it can hit hard; when I hit my limit for the day it is like I’m pressed up against a wall, unable to move at all, unable to even breathe anymore. Every little stimulus suddenly takes my complete attention and the massive tidal waves of the millions of little things come crashing down around me.
If this happens when I’m in the middle of something, my instinct is to just focus even harder on the thing I’m working on, rushing to try to get through it, getting caught up in a feedback cycle of anger and overstimulation and frustration and pain. I work harder, making the pain worse, making every little background sound worse, making every little imperfection in my fingernails and every tiny stray hair on my face something to pick at and try to fix using whatever tools are readily available. After a certain point I can’t keep going and simply shut down.
Some days are better than others. One day I might be capable of recording a song, or drawing a comic, or finish a major feature or two on some software; another day I might be barely capable of even feeding myself or taking my daily walk. And bad days don’t care about my schedule or responsibilities no matter how critical, but if it conflicts with some commitment I have, the commitment usually comes first, and I have to dip into my future reserves or compromise on how well I deal with whatever it is I must do, and that overextension costs double.
If I’m working in a coffee shop, even the slightest background noise, or the ambient music, or other peoples' conversations, or people asking me questions about what I’m doing, any of those little, trivial things can whittle away at my attention and patience and ability to get anything done. But simply working from my quiet place at home is no way to maintain connections to the outside world. I need to get out of the house or else I feel like I’m languishing in isolation.
In recent years this has made it quite difficult for me to work on other peoples' schedules. At my best I am just as productive as I ever was, but at my worst I am unable to do things for days, or even weeks, at a time. This makes it difficult for me to remain in the good graces of any employer; even when I’m self-directed I end up feeling the crushing guilt of not being able to produce things on a regular schedule as would be appreciated by my patrons or readers or the like. This feeling of guilt also motivates me to put production ahead of my ability to produce, and if a bug report comes in on something I maintain or if a friend or associate needs something, I go right back into digging-deep mode, once again attempting to go into debt on my pain reserves for the purpose of maintaining a façade of functionality.
(It doesn’t help that other people never seem to quite understand – or I am incapable of expressing – just how much pain I’m in and how difficult it is for me to do the things that I would love to be able to do were it not for being in agony at the moment. And in this culture it still feels necessary for me to push through it.)
And oh, the little microaggressions I get from well-meaning people who want to support me, if only I were able to satisfy their needs.
“I’d read your comics more if you maintained a regular update schedule.” (Often followed by, “I never got the point of RSS.”)
“I’ll play your games when they’re done.”
“I look forward to seeing this project be finished.”
“Why can’t you just do this thing for me real quick?”
“Can’t you just take some ibuprofen?”
I do have some pain management strategies. I use software to remind myself to take typing breaks. (If someone is watching over my shoulder when a break starts, they almost always ask “Can’t you pause that while you finish this?” without the understanding that if I pause a break, that only means I need to pay it back with interest later – a destructive pattern I constantly fall into and struggle to not continue.) During my breaks at home I take the opportunity to do a bit of cleaning, or I do wrist stretches or use my Powerball or do other upper-body exercises, lifting dumbbells or doing chin-ups.
I have spent so much money on ergonomic keyboards, trying to find the perfect device that lets me maintain basic proficiency without causing more damage. I can never even tell if the newest keyboard is actually helping me out, making it easier for me to ignore the pain, or simply transferring the oncoming damage to a different part of my body.
I use cannabis products (particularly high-CBD ones) and, when things are especially bad, prescription painkillers. These do not ease the pain (much less help with healing), but they at least let me relax enough that I can sleep through it and restore my spoons. In theory. In practice it makes it so I can ignore the pain and I end up injuring myself more, working because now it feels like I can, until the next day, when I am so much agony I have trouble even getting out of bed.
A question I am frequently asked is if I’ve considered surgery. Unfortunately, there is no surgery for my particular set of issues; while carpal tunnel syndrome is very well-known and does have a surgery available, carpal tunnel syndrome is one of the few wrist problems I don’t have (at least not usually). There is no actual treatment for tendinitis or nerve adhesions; there are only management strategies to make it less bad. “Just don’t use the computer for a month” is the closest I’ve gotten to a treatment plan, and even having done that I’ve found it doesn’t actually help.
I have seen so many specialists for these problems. This always leads to them wanting to do expensive tests for carpal tunnel syndrome, me insisting that it isn’t CTS, them insisting that I have the tests anyway so that they can diagnose me “properly,” me resignedly undergoing the tests (which cost quite a lot of time, money, and energy), and them saying, “It isn’t carpal tunnel syndrome” and that being the end of this “proper” diagnosis. The most recent specialist I saw – under the hopes of getting diagnosed with a chronic pain condition so that I could take a few months' medical leave, covered by the policy I’d been paying into – only had this to say:
“Well, it isn’t carpal tunnel syndrome; it’s just pain, nothing that should prevent you from working.”
Those words resonate in my ears, because it’s the pain that keeps me from working.
Acupuncture is ineffective. Massage only helps briefly. Physical therapy is expensive and unsustainable.
The bureaucracy of every software company I’ve worked at has made it very difficult for me to go on any sort of leave; they require a medical diagnosis, and the only diagnosis I can get is a non-diagnosis of “it’s just pain.” And then any continued performance problems I have at work get me a poor performance review and a threat of a PIP, a hideously inhumane process that only exists to absolve a company for terminating an employee who isn’t able to perform to their high standards 100% of the time while protecting them against a wrongful-termination lawsuit after extracting a final, painful trace of output from the burnt-out husk of what used to be a human being.
If I can even get them to listen, the best they’ll do is an ergonomic evaluation – simply repeating the chair and desk setup stuff I’ve heard dozens of times, and already have a good handle on – and then sign off their form saying that they did everything they can. And my pain just keeps getting worse and worse.
And voice dictation is out of the question; while some work has been done on making voice support work for programming, a modern workplace does not lend itself well to voice control of computers (what with the pathological proliferation of open-plan offices), nor do I want to wear my throat out the same way I have worn out my wrists. (Not to mention how universally “funny” many people think it is to disrupt anyone who stands out in any way.)
The biggest obstacle I run into is simply a lack of understanding. If I am in agony and want to speak to someone about it, they only speak in platitudes or talk about a friend-of-a-friend who had successfully treated their pain in some way, or talk about how everyone has problems and I should be thankful I even have hands, and regale me with tales of other people who had things worse. I once had a particularly pathological manager who told me how I should be grateful for how good I have it and refused to talk in person, insisting on only discussing this stuff over internal instant messaging from one cubicle over – which, of course, was difficult for me to participate in because I was in agony. His reason? He didn’t want to stop listening to his music for 15 minutes.
I wish I had any solutions here, but I only have problems, desires, and a constant feeling of pain that I cannot simply “work through,” and a sense of hopelessness, being stuck in a society where one’s value is measured in terms of productivity. And despite all my past accomplishments and the things I have done for others, that alone doesn’t pay the bills.
All this is why I am trying to focus on my own projects, and on the things that I care about; I want to work on music and games and comics and things that bring people pleasure, rather than simply filling corporate desires or feeding the machine of capitalism, building systems that optimize the ability for companies to extract as much value as possible out of the customers they view only as “eyeballs.” And I hope that what I can do is enough, but it never feels like it is.
I hope that at the very least this ramble has left people with a better understanding of what their always-in-pain friend or coworker is going through, or has given someone else with chronic pain at least a slight feeling of solidarity. Maybe at some point I’ll find a solution for this problem that’s affected me for at least the last 22 years. But above all else, we need, as a society, to change how we think about productivity and the intrinsic value of a person.