On Chronic Pain
The thing about illness in movies is that there’s a soundtrack. And an audience. In books there’s a romantic turn of phrase. And an audience. In songs there’s a minor key. And an audience. Pain in pop culture is to be consumed, not healed. Witnessed, not felt. The people on screen or on the page, no matter how multidimensional, are foils to us, the true protagonists. The fictional, ill protagonist (read: martyr) sits in waiting rooms where cute boys wait to sweep her off her feet before she goes in to see a doctor who has a magical answer that comes with a magical treatment. In two hours, or two hundred pages, our literary parallel experiences illness, diagnoses, treatment, and a satisfying emotional arc. Turns out, pain is much less poetic when there’s no soundtrack, and much less bearable when there’s an audience. For me, anyway.
For a long time I romanticized my pain. At the beginning of high school I thought it was sports-related, so having a knee brace meant I was playing hard enough. At the end of high school I thought it was stress-related, so lying on my back on the floor breathing through back spasms meant I was working hard enough. In college, I pushed through shoulder and back pain again. Then, my senior year, I had to ask for extensions because I couldn’t write, couldn’t type. I had to take breaks from using my hands. Shooting pain from my wrists to my fingers, to my elbows. Tremors. Weakness. I stopped feeling like I was pushing to make myself stronger and started wishing I had taken better care of myself. Started wishing I knew how to take better care of myself.
I write. I type. I work with little kids. I crochet. I draw. I bake and cook. I garden. I take care of my cats. I dance. I do laundry and dishes. Normal people stuff. But you can’t do those things when you can’t move your hands.
I was in some sort of doctor’s office once every two weeks for a year after I graduated college. I was told I probably had carpal tunnel. Nope. Rocky Mountain Fever. Nope. Lupus. Nope. Rheumatoid arthritis. Nope. I saw neurologists, osteopaths, general practitioners, disease specialists, and rheumatologists. I had CT scans and MRIs and X-rays. Some horrible test for carpal tunnel; they stick a needle deep into your arm and tell you to twist your muscles around. Not only was that one hell of an emotional rollercoaster – for myself and my loved ones – but nowhere along the way did anyone offer a solution, even a temporary one, to my pain. Because they didn’t know what was causing it, they didn’t know how to fix it. Because they didn’t know how to fix it, they didn’t care. Or, at least, they didn’t make an effort to help. They didn’t say anything about it. If I sound pissed, it’s because I am. I’m pissed at every damn doctor who watched me unstrap myself from braces and tape and said nothing to me when I asked what to do about the fact that I couldn’t use my hands. I was lucky enough to have my mom with me at those appointments. They didn’t answer her questions either.
The emotional trauma of physical trauma is layered and fucking boring. Coming to terms with the fact that your body is betraying you, moving past that resentment and anger, loving your body in spite of the fact that it feels like you’re on opposing teams. I don’t know how to do that shit. Not consistently, anyway. For me it’s strange because there is no one cause of my pain, and no one area of my body to which it is confined. My mom ended up finding me a general physician who listens to me. After another set of tests, she told me I have an overactive immune system, which is why my tests for rheumatological stuff came back positive. I don’t have lupus or rheumatoid arthritis, but I have some of the symptoms. There are certain things I have to be careful of, certain things to avoid, preventative actions to take. She took into account my diagnoses of OCD and generalized anxiety, my history of dancing intensely. She prescribed a treatment plan that considered my whole life: the ways in which my mental health affects my physical health, and vice versa, past injuries, etc. I have medicines and exercises. My hands don’t hurt as much, and they hurt less often. When they do hurt I can rely on shorthand with the people close to me: “my hands are doing their thing.”
I am extremely fortunate to have the resources that I do: my parents, my friends, my insurance plan, my doctor. The more appointments I went to, the more books my mom read about rheumatological issues, the more I understood my privilege in dealing with this. There is no “but.” It’s just an important piece of the story. Lots of people have no health insurance, no one who can go to every appointment with them, no doctor who listens.
Chronic pain in real life is not poetic. It is not romantic or sentimental. It’s debilitating and banal in equal measure. There is no dramatic arc, no swell of orchestrated music. There is no leaving the movie theater or closing the book. You get bored by talking about it and people get bored by hearing about it. Missing work or school for doctor’s appointments feels stressful and chaotic. Calling insurance companies to talk them into paying for your tests is annoying and aggravating. Knowing people worry about you is an enormous privilege and a hard, hard thing. You experience little relief, and you can offer even less. You make a deal with one face of your emotional shit, only for it to pop up again looking different, like the world’s worst version of Whack-A-Mole. Whack-A-Trauma. I’d pay to play that – smash a metaphorical representation of my achy hands, those useless doctors, and get a prize. But there is no prize, that’s the point of the word chronic.
That’s not to rule out healing, though. Healing isn’t a prize, or a stopping point. You can heal from chronic pain without ridding yourself of the pain, you just have to commit to working at it all the time. You have to make space for it in your life, welcome it like an old friend. The pain is your companion, and the healing should be too. It’s not a glamorous solution, and it certainly doesn’t always feel like a satisfying one, but it’s the best I can come up with. Your recovery ends up being as relentless as your illness.