The Answer to Chronic Illness

I read a lovely review for Super Sick in which the writer commented that she had been reading books on chronic illness in search of an answer. My book, unsurprisingly, doesn’t provide one. Unfortunately, there isn’t an answer. At least, I don’t have one. That’s why it’s challenging and difficult and painful. That’s why it’s chronic.

In Chapter Three of Super Sick, “Doctor House Knows Best. Sometimes. Maybe.”, I interviewed a doctor about the treatment options for people with chronic pain. I learned that there aren’t any good treatment options:

There’s only so much a doctor can do for chronic pain. John mentions that doctors basically have four options for pain control: analgesics (like Tylenol), anti-inflammatories (like Advil), opiates (like fentanyl), and neuropathic pain medications (like amitriptyline). None of these methods is great for chronic pain. Analgesics often don’t help; anti-inflammatories can damage kidneys and cause gastrointestinal bleeding; opiates are addictive and can have other complications as you gain a tolerance for them and require more; neuropathic medications often cause side effects and don’t provide pain relief. All of these meds are what doctors refer to as a “high number to treat,” which means they only work for a few people out of a large sample size. In other words, even if you can withstand the side effects, it’s unlikely the medication will help at all.

Doctors don’t usually phrase it this way because they want us to have hope, but I actually found hearing this… well… “comforting” isn’t quite the right word. “A relief,” maybe? There’s something about knowing there isn’t a great option for treatment that makes me less frustrated at doctors for not helping me. And it doesn’t mean there’s no hope, but that I can have a more realistic hope and search for ways to cope with my condition.

I don’t have answers about how to mentally deal with chronic illness, either, only methods that have worked for me. And by “methods,” I mean trudging through the endless swamp of illness as best I can and trying not to get sucked down (that schlurping pop noise is me lifting one foot after the other out of the muck). I do a lot of relying on other people, a lot of distracting myself with things like video games, a lot of resting. I’m frustrated and anxious and afraid a lot, but I try to find ways to get my body to relax because being in a constant state of physical tension doesn’t help.

I like having the answers. A problem that doesn’t have one is just frustrating. It’s why it’s so difficult living in the “undiagnosed” zone that many of us with illnesses exist in—at least a name for our condition would be some kind of answer. It’s why random people offer us so many solutions when they learn we’re sick (no, kale will not help me. Yes, I have been to a doctor). It’s why society pressures us to be healthy and to heal. We want to know. We want to solve. We want to feel better.

Instead, we have to live with the discomfort of our questions. It’s a weird place, but I’m here. If you are too, you’re not alone. I hope that’s something.

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Thoughts from a chronically ill, geeky writer. Posts extremely likely to include topics like disability, feminism, social justice, sci-fi, fantasy, and video games. Put on your nerd hat, folks.

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