I imagine that everyone with a serious or chronic illness knows the date of their diagnosis. Mine was January 13, 1998, which is to say 22 years ago today.
The diagnosis was by that point a formality. I’d known something was up since June 1997—I was in constant pain and I had trouble walking and sleeping—and had been talking to doctors and undergoing tests. The previous month I’d received results from a bone scan that suggested a possible diagnosis of ankylosing spondylitis—a disease I’d never heard of before, though it turned out that there was a family history of it. The rheumatologist reviewed that family history, the symptoms and the test results and concluded that I had a “textbook case” of AS.
(As it turns out, my case is not so textbook, or at least the textbook has since changed. A 2012 MRI revealed no evidence of spinal fusion after 15 years, which made a different rheumatologist wonder whether I had AS at all. She retracted that doubt at a later visit when I arrived in flare and she saw how I walked. I suspect that what I have is non-radiographic axial spondyloarthritis, which is similar to AS and is treated the same way, but doesn’t involve spinal fusion and doesn’t show up on X-rays. I’ve yet to run my theory past a rheumatologist, though.)
I’ve been living with that diagnosis, with modifications, for more than 22 years. I’ve always been open about my illness (much to my mother’s horror) and I used to talk about it a fair bit—I even ran a blog about it for a while—but lately I’ve been talking about it a lot less. That’s not because I’m doing better, because honestly I’m not (though there still seems to be no sign of fusion). It’s because talking about my illness is, even after all the elapsed time and the care received, still a potentially hazardous activity. Even under best-case conditions, talking about my illness requires a tremendous amount of emotion work.
See, when you’re dealing with a less-common disease, disclosing that disease to someone requires that you educate them. If they’ve heard the name “ankylosing spondylitis” before, chances are it’s because they already know someone else who has it, or it’s because they have a medical background. (Apparently my pharmacist flinched when Jen told him.) If they haven’t, I try to use a pithy analogy, because they may not sit still for the full explanation:
- “It’s spinal arthritis.”
- “It’s like rheumatoid arthritis, but for the spine and rib cage.”
- “Basically, my spine is trying to fuse itself solid.” (Less true with nr-axSpA than it is with AS, but let’s not confuse them with the details, and besides, spinal fusion isn’t off the table.)
That’s usually sufficient to get the point across. I live in a village with lots of old people for whom a severe case of arthritis is all too familiar; my neighbours are almost universally sympathetic. They ask after me in this context, and when the temperature, humidity and air pressure bounce up and down they wonder how it’s affecting me.
But my neighbours and casual acquaintances don’t require all that much from me, nor I from them. It’s the more serious relationships that can get problematic: where I have to spell out the implications of my condition, set boundaries about it, and even have to defend the fact that I have what I have.
And that can be absolutely fucking exhausting—and it’s not like this disease leaves me with energy reserves to burn.
For example, social outings become a lot more difficult than they should be. I can’t be on my feet for more than 90 minutes at a time: that has implications when visiting a museum or a mall. When things are in flare I have trouble bending: that makes putting on and taking off shoes something I have great difficulty with. And if I’m in flare I can’t walk very fast—something that isn’t obvious when I’m tall and don’t stoop (maintaining good posture is part of the treatment regimen) and don’t use a cane very often—which means that when walking in a group I’m often left behind.
But setting boundaries can be an extraordinarily risky proposition. For one thing, when the pain or exhaustion forces me to try to tap out or explain why I can’t do, or haven’t done, what someone else wants, I’ve been accused of malingering—of using my disease as a crutch or as a weapon against others. “I’m in a lot of pain right now and I can’t handle this” is interpreted as a get-out-of-jail-free card: how nice it must be to have an illness that allows me to dodge my obligations!
Now to be fair, very few people have done this. But you’d be shocked by those who have: members of my family, and other people you’d normally expect more compassion and understanding from. But then these are the people who, unlike my nice neighbours, actually expect something from me. A chronic illness is a “no” they can’t argue with, can’t overrule, can’t gaslight—and that enrages them. It’s a boundary they can’t cross, and they resent that.
Less fraught is something else that nonetheless takes a lot of emotion work: when people try to solve my illness for me. The most common scenario is when people hear about my disease for the first time, get the pithy explanation above, and then go for the low hanging fruit.
- “Have you seen a chiropractor?”
- “I’ve heard good things about turmeric. Have you tried it?”
- “You should do yoga.”
It’s easy to roll the eyes at helpful suggestions like these. No, I’ve been in near-constant pain for 22 years and never once thought of trying this obvious thing that everyone knows about. I mean, look. I appreciate it as an expression of sympathy. Ill-advised, and one that requires effort on my part not to respond unkindly to, but they mean well, which is more than some can say. Bless their hearts and so on.
But I’ve been thinking about it, and it occurs to me that this is an example of two other things:
- People have a hard time understanding chronic illness. They hope that you feel better soon, and in some way they expect you to. “Get better soon” isn’t just a sentiment; in some ways it’s a command. It confuses them when you don’t. Why aren’t you better? Don’t you want to be?
- In a similar vein, people have a hard time understanding an incurable illness. One of the hardest things that anyone newly diagnosed with my condition has to come to terms with is the fact that there is no cure for it. It’s not much easier for their loved ones. They tend to be in denial about the incurability: surely there must be something: this new diet, this quack cure, this one trick you can do.
Basically, you’re supposed to get better or die.
The upshot of this is that if I’m in pain, or my mobility is restricted, it can be seen as evidence that I’m not doing enough. That I’m not working hard enough to get better. That I haven’t tried everything yet. That I’m not interested in getting better. (Is that where the accusations of malingering come from?)
Part of the problem is that they have no idea how serious my condition is. It’s not immediately obvious from how I look, because—at least when I’m not moving—I don’t look sick. I was diagnosed relatively early and started treatment relatively quickly. It has not progressed significantly. And I’m only out and about when things are going well. Very few people have seen my disease at its worst. So it’s easy to make the mistake of seeing me as someone who’s managing a relatively mild condition badly, rather than someone who’s managing a fairly severe condition rather well.
But correcting that misapprehension takes emotion work on my part and a willingness to listen on theirs. That rarely works out. You find out very quickly who’s legitimately sympathetic, and who’s simply performing a thin veneer of politeness, a veneer that is cast aside when I set a boundary or point out ableism.
I mean, the disease is hard enough. Dealing with other people’s reactions to it generally doesn’t make things better.