This month is my fifteenth anniversary of being chronically ill. I’ve spent a lot of time, when I was too symptomatic to sleep, or when I was in the hospital for long stretches, trying to make sense of my experiences. As my friend Pauline Harder says, chronic disease is a narrative challenge: it defies all patterns other than repetition. It’s hard to tell a good story about it. Here: listen to this.
My hair fell out over the course of about a year, first in patches here and there. I remember my doctor telling me that if it falls out in clumps, it probably won’t all fall out. Then it all fell out. I discovered that eyelashes are really useful for batting tears out of your eyes and that eyebrows are the main things people subconsciously register when they see your face. Alopecia made me look like a different person—a sicker person: it was like having a big sign on my body that said, “Fuckered.”
The alopecia was, as near as anyone can guess, a delayed response to a flare-up of colitis that brought my life to a crashing halt and ruined my credit rating two summers before. I had had colitis for almost a decade at that point, but it left me alone for long stretches at a time, and I hadn’t been on medication for years. Both Crohn’s disease and colitis involve random inflammation of the digestive tract, but in Crohn’s the symptoms tend to be constant, whereas colitis can be more episodic.
I went to the hospital for the first time in my life in May of 2002, complaining of a painful, burning sensation in my side and back. I’d had what I’ll euphemistically call weird shits for a few weeks and had lost my appetite and, more pointedly, my thirst for beer in the weeks leading up. Within a few hours of arriving at Emergency, I was told I had pancreatitis, and would have it forever. A couple of months later, I returned to the hospital with similar symptoms, and was told I now had colitis, and would have that forever as well.
Pancreatitis, it turns out, is no big deal: you quit drinking and you move on; I still have massive growths on my pancreas, and they hurt occasionally, but as chronic diseases go, it’s pretty much a freebie. Colitis was the real challenge. When it flared up, it was devastating. It robbed me of jobs, homes, and artistic projects, and I needed strong drugs with terrifying side effects to get it under control. Between flares I pieced things back together, learned what I could and couldn’t eat, and moved on with my life.
After the big flare that depilated me and made me a bad loan risk, my insides were damaged enough that I needed to be constantly medicated, with a drug that gets pumped into my bloodstream every eight weeks. The drug is absurdly expensive, and only covered by my means-tested drug plan very reluctantly; even getting the drug was, on a purely administrative level, a stressful part-time job. After a rocky start, it now keeps me symptom-free, though if I eat whole grains or raw vegetables I suffer. And I can’t take Echinacea, because it stimulates the immune system, and my immune system, if stimulated, will almost literally turn me inside out, for no clear reason.
A lot of otherwise intelligent people are confused by this. Echinacea is good for you, so is fibre, and so is alcohol, in moderation—right? People who are generally healthy, who get sick at flu season if their system is a little overtaxed, learn things about how health happens that bear no relation to how it works for people with chronic illness. They tend to believe that foods with specific healing properties are universally health-inducing; at the outside they believe that a positive attitude cures all, or is at least worth a shot. It’s hard to be patient with people like this, because there is a sense in which, in their naïve faith in the simple solutions that help them cope with very minimal problems, they are blaming very sick people for getting sick.
Truth be told, when I first got sick I believed that I had made myself sick with negative thoughts and hard living. I had taxed my system, but lots of other people did much worse than me and didn’t get sick at all, let alone land two major chronic illnesses. Medically speaking, no one knows what causes either of my diseases. But it’s hard. We yearn for meaning, and find it in the vagaries of a body in pain the same way we find a face in an electrical outlet. With chronic illness, you get better, you get worse, you get worse again, then you get a bit better, then who the fuck knows what happens.What’s it all about, this story that goes nowhere? Ultimately you’re just sick, and it means nothing and you learn nothing—and that’s ok.
That’s what being chronically ill is like for me at least.
Photos by B Mroz.