I’ve had the idea for this post kicking around in my head for some time. When I tell people I have psoriatic arthritis — and that I have since I was 20 or so — the first thing they want to know is what it feels like, especially if they’ve only ever seen me in that Superwoman costume I seem to put on every day. And really, I don’t blame them; I try really hard to make sure no one can tell I’m any different than the average 25-year-old.
But every now and then I deal with someone who can’t — or, worse, won’t — imagine what it’s like. That’s when I have to try really hard to keep control of myself. I have to remind myself that smacking him or her upside the head — e.g., what I’d really like to do — isn’t productive.
With those jerks people in mind, I’ve been trying to think of a way to explain it, a way that even the least empathetic, the most self-absorbed person could understand.
So, have you even had the chicken pox or ridden horseback or gone rollerblading or learned how to ski? I know that’s a lot of random experiences thrown together, but bear with me. Do you remember the full-on body aches, the pain in places you didn’t even know existed, in your muscles and your joints? Good.
Now, do you remember in college or high school when you pulled two all-nighters in a row? Do you remember how tired you were, how you had to concentrate really hard on what other people were saying or on what you wanted to say? Remember how it took you awhile to just understand the simplest of words? Remember how when you finally got to sleep, you just woke up feeling worse? Now, we’re getting closer.
Remember when you broke your arm or leg? How, you’d go to use it like
you always had, but it couldn’t respond properly? And how, even when you got the cast off, it still felt funny, didn’t work the way it always had?
Well, all of that, all at once, is kind of what having psoriatic arthritis is like. There’s more, of course. The side effects from meds that can make you angry or wired or exhausted or hungry all the time or never. The psoriasis legions that flake and bleed and itch so much you feel like you’re going to go insane. Having to worry about explaining this nonsense to other people.