No one tells you about the uncertainty that comes after getting diagnosed with psoriatic arthritis (PsA). I don’t mean “What medication should I be on?”, or “Who am I supposed to tell about this?”, or even “Is my doctor really sure?” I mean that you end up not trusting your body anymore, because you suddenly have the sense that your normal isn’t the same as everyone else’s normal.
Before my diagnosis I assumed that it was standard to feel sharp pains in my lower back when I attempted to lay flat on the ground during my fling with pilates, and that surely everyone woke up random Wednesdays feeling like they’d been run over by 10 trucks (without the expected mid-20s excuse of being hungover). It turned out that the first thing to go after being diagnosed was this (admittedly warped) sense of normality. I started wondering if my way of gritting through the day was actually the same as everyone else’s. I eventually came to the conclusion that it wasn’t, and that meant I had to talk about it (ugh) with people (ugh, ugh).
At the time of my diagnosis, I was living in Philadelphia and commuting out to the suburbs for work. As someone who had never (and still hasn’t) learned how to drive, this meant spending a lot of time on the train, which, for better or worse, also meant spending a lot of time thinking about things. After an evening commute home wallowing in self-pity, I forced myself up, grabbed my iced coffee at the station and spent the next 45 minutes caffeinating and giving myself a mental pep talk on the need to make a change — a pep talk in which I decided that the first thing I had to do was talk to my boss.
I’ll be honest: I’m lucky enough to have had a terrific relationship with my bosses at all of the companies that have employed me, which meant the conversation kind of went like this: “I found out yesterday that I have psoriatic arthritis and I don’t really know what that means for me in the long term yet, but I might need to work from home from time-to-time.”
Talking about my psoriatic arthritis with colleagues took some getting used to. It’s kind of embarrassing, especially if you, as I do, come from the old school mentality of Work is work. Home is home. You have to admit to someone with whom you’re not necessarily friends — someone who knows maybe four things about your home life and about whom, in return, you know maybe three — that your body, the thing you kind of hope everyone ignores, isn’t working the way it’s supposed to, and it hasn’t been for a while.
I was someone who always, always felt bad about taking time off of work for being sick, which meant that I wasn’t great at figuring out the dividing line between You’re just tired and You have the flu. Asking to work from home because of something other people couldn’t even see? That maybe I’m imagining? That for years I assumed was just the normal state of being? That was a huge adjustment.
It’s still a huge adjustment. I still feel bad when I have to type, “I’m having an arthritis flare and I’m going to work from home,” because I still worry (or, if I’m being really real here, I still hope) that I don’t understand my own body, and that I really just am tired or lazy, like a normal 32-year-old is supposed to be.
I still take public transportation to work, only it’s a different city, a different suburb, and a different job. I work in tech now, and I live in San Francisco, where it’s far more acceptable to work from home (or, hell, a festival). That being said, I still worry what my colleagues think of me.
“Who cares what people at work think?” you might be asking. The answer is… I do. So, yeah, sometimes I go down four flights of stairs, get the bus to the train, and grit through work, just like I did with those pilates classes and all-too-sober random Wednesdays a decade ago. But you know what? Sometimes I don’t. I’m a little older, and wiser, and kinder to myself now, which means I’m also a little less hesitant to throw in the towel and work from my apartment, with its recliner, cats, Chinese food leftovers, and incredible view of San Francisco. Turns out my normal doesn’t have to be so terrible after all.
This article was written by Leah Friedman, a regular contributor at PsAndMe.com, a social site dedicated to helping the whole PsA community.