Lately I’ve been reluctant to post regular updates on my health, largely because of what I think the responses will be.
Some people will make sympathetic noises: they feel bad for me and wish there was something they could do. “Get better soon,” they’ll say. Some people will try to be helpful, but won’t be. “Have you tried this?” they’ll ask — chiropractors, glucosamine — forcing me to swat down ideas I considered a decade ago and then getting huffy when I don’t seem to appreciate their help. Some people will get competitive: “You think you’re having a bad day? Let me tell you about mine …” As though they have to win at whose life sucks the most. And some people will tell me to stop whining already.
Even the most sympathetic response can be problematic. Telling someone with a chronic but incurable condition to “get better soon” — what does that mean? Ankylosing spondylitis isn’t likely to kill me, but I won’t ever truly get better — I accepted that fact a long time ago. And if I get better for a little while, and then get worse, as will inevitably be the case, will you be annoyed at me? “I told you to get better!”
For me, not doing well is routine; posting about my ups and downs is like a diabetic posting about the fluctuations of their blood sugar levels. It’s essential to me, important to those close to me — and then interest drops off precipitously from there. While I have to think about it every day, hardly anyone else needs to. Sometimes I need to let people know what’s happening, because this disease does sometimes prevent me from doing things: from attending social functions, from working full-time in the city while living out here, even from attending my grandfather’s funeral in Calgary earlier this week.
Even then, I don’t like admitting that it’s the disease that’s stopping me. I’ve had ankylosing spondylitis for 14 years — for more than 5,000 days — and I don’t like it. I don’t like the fact that it shuts my life down as often as it does. No, not one bit.
When I see status updates bemoaning everything from a change in the weather to boredom at work, I’m in an awkward state of mind. I think: “If you can complain about that, surely I can complain as well.” Because so many of us whine about things that are so trivial. But it seems, counterintuitively, that to complain about my disease in the same way would somehow lessen its importance. This ain’t the same as getting the wrong size of fries.
I’m just not sure what to say, or how often I should say it.