If we’re making a game out of getting diagnosed with psoriatic arthritis (PsA), I’d say that I earned maximum points when I called home to break the news to my parents while riding a city bus. I could say “I don’t know why I didn’t wait until I was home, and it was quiet, and I could have some time to put a positive spin on it,” but that would be a big fat f**king lie. I had the conversation with my mom while I was on a noisy Philadelphia bus because psoriatic disease isn’t a new topic for her. She and I have a weirdly (or, depending on your point of view, sadly) mirrored relationship with psoriatic disease. It’s just part of who we are; we can’t hide from it; it’s present every day of our lives, and has been since we were both little girls.
My mom was 5 when she was diagnosed with psoriasis in the 1950s. This was back when being dosed with arsenic, or being smeared with coal tar and laying out in the sun were accepted treatments, and she had almost full body coverage. I don’t want to speak for her, but I know she felt ashamed of and betrayed by her skin, to put it mildly. When she and my dad decided to have children, she asked her doctor what she could do to prevent passing it on, and was devastated to hear there wasn’t anything. She rolled the dice, and I, for one, couldn’t be happier.
I was 6 when I was diagnosed in the early 1990s and I wasn’t ashamed until middle school, when, with the advent of instant messaging, a classmate anonymously sent a note asking if I still had “that crud behind my ear.” In later years, with bad spots on the tops of my feet, people would ask me if I’d suffered severe burns, or would avoid sitting next to me on the subway, but instead of being embarrassed, I’d work to find the silver linings “Hell yeah! I have a seat to myself!” As someone who is full to the brim of self-loathing on every other count, I decided that one thing I wouldn’t be bothered by was psoriasis, because how could I when my case was so pedestrian as to be laughable compared to my mom?
I grew up talking about my skin and my mom’s skin and everything that could go wrong with everyone’s skin. I didn’t even know psoriatic disease could affect anything but skin until my mid-20s. Sure, my right hip was always tender, but I assumed it was because I was fat. Sure, I was tired all the time, but I assumed it was because I was depressed.
The one thing I couldn’t ignore was why the fingers on my left hand kept swelling up. And when I mentioned it to my mom one weekend when I was home, she frowned and said, “I bet you have psoriatic arthritis.” I frowned and rolled my eyes (though, to be fair, I do that about every 8 minutes on average anyway), and ignored her.
We’re both doctor-averse, but she kept on me to see a rheumatologist, and in response I kept on frowning and rolling my eyes.
We did this for a year.
So imagine my shock when I went to the rheumatologist and found out that yes, It sure did sound like PsA, what with my symptoms and family history, and hey, did I know my hip joint was involved, and maybe that was why it hurt like hell all the time? Well, no, I did not know that. That aspect was, in fact, a real shock. A novelty, almost. A fun new twist on a familiar problem.
And that is why I called my mom from the bus on the way home from the hospital. “What’d the doctor say?” … “Well, I have arthritis, but I’m just glad to know what’s going on.” She peppered me with more questions, but it wouldn’t be for a few weeks until she’d admit that she felt guilty, like she’d “done this” to me.
I told her (and continue to tell her) that it’s ridiculous to think that way. This is just something that happens - genes are genes! I’m taking treatment, and I’m doing well, and that it could be much, much worse! She reminds me it’s not a competition. My doctor reminds me that I’m allowed to feel frustrated anyway.
Despite the fact that my joint involvement is worse than my mom’s, I think I have the better end of the deal here. I was raised by someone who could make psoriasis mundane, when for most people it starts out as embarrassing, painful, and terrifying. I’m lucky to have learned from the best how to advocate for myself — when I finally get around to it.
This article was written by Leah Friedman, a regular contributor at PsAndMe.com, a social site dedicated to helping the whole PsA community.