July is Disability Pride Month, and August is when the National Psoriasis Foundation kicks off its 30 Days of Action campaign. Despite affecting 5-7 million people in the United States and getting all kinds of attention thanks to celebrities like Cyndi Lauper, psoriatic disease seems to still be deeply misunderstood by the general public.
The Wife With One F was diagnosed with psoriasis in 2018 after years of being ineffectually treated for eczema. There aren’t hard numbers on how often this type of misdiagnosis occurs, but if you spend any time on Facebook groups dedicated to the subject, you’ll see it’s a pretty common story. About a month later, my wife was diagnosed with psoriatic arthritis. This came after about two years of being medically gaslighted by her previous rheumatologist.
When people hear “psoriasis” they mostly think skin. That’s understandable. Most pop media on the subject and those aforementioned commercials focus on the skin aspect. Psoriasis is an auto-immune disease like endometriosis. That means that the body attacks itself. In this case, the immune system’s t-cells start eating the person’s skin. The body tries to compensate by regrowing skin, which leads to itchy buildups.
Sometimes you hear that these are only occur on bony prominences like the elbows. While it’s more common there, the plaques can spring up on any surface. This can lead to open lesions from scratching. If untreated, people with psoriasis can end up with infections and even heart disease.
The lesions are not contagious, but that doesn’t stop a lot of ableism and discrimination. There’s a reason old commercials used to refer to it as the heartbreak of psoriasis. The wife has had patients recoil from the plaques on her arms. It hurts her when that happens.
About 30 percent of people with psoriasis develop psoriatic arthritis. That’s when the immune system attacks the joints as well as the skin. This causes debilitating pain, fatigue, and stress on the immune system. Almost any day my wife isn’t working at the hospital, she has to stay in bed to recover. Even going to get her hair cut saps a lot of her strength. Push too hard, and she triggers a flare up. When that happens, the pain increases exponentially and comes with other fun symptoms like nausea and insomnia.
Treating this disease is a nightmare. My wife is basically on low-grade chemotherapy all the time. The medications work for one or two years, then they lose efficacy. Once that happens, we play Russian roulette with the insurance company to see if a new drug will be approved. Paying out of pocket is not an option. Monthly doses can run up to $5,000. They are also immune-suppressants, so dodging COVID for three years has involved almost complete hermitage.
Sometimes those medications will clear up her complexion beautifully. Since I married a porcelain-skinned goth chick who knows the importance of moisturizer, it may not even look like she’s sick anymore. Unfortunately, that creates its own headache.
Since people either don’t know what psoriatic arthritis is or equate it with the normal joint pain a middle-aged person would have, they can’t see the toll it takes on her. She works 12-hour shifts at a hospital three days a week. When I pick her up at the end of the day, I almost have to carry her out of the car. It’s a constant level of pain and exhaustion, but from the outside, she looks fine.
Psoriatic disease creates this Oops-All-Crapberries existence. It can be a visible disability, but no one thinks lesions and plaques are inspirational. The internal component is devastating, but unkind ableist people just think you’re being dramatic or lazy even though it’s taking Herculean strength to keep going. If more people understood that, maybe the world would be a less rough place for people with this condition.
This article appears in Jan 1 – Dec 31, 2023.
