Growing Up With a ‘Gross’ Skin Condition

I was a sophomore in high school, working on the school’s yearbook after the last bell of the day rang. Though Yearbook and Newspaper were separate classes, we all mingled in the journalism room after school.

A junior newspaper girl with her friend sat at the computer next to mine. I heard her mention psoriasis after an ad for a medication popped up on her screen.

Her friend asked her what psoriasis is, and for a moment, I thought about telling them about it and that I have it. The moment was short-lived, though. The newspaper girl shuddered and said it was itchy skin and “so gross.” People who have it should, like, shower more, she said.

I continued to act like I was focused on my work. I was angry at their insensitivity and ignorance. But more than anything, I was embarrassed.

I shouldn’t have felt embarrassed. Psoriasis has nothing to do with bathing, and I’m not gross for having it. But it’s hard not to feel embarrassed when classmates act like psoriasis is leprosy.

I’ve had psoriasis my entire life. I was officially diagnosed with psoriatic arthritis when I was 6, but psoriasis came before arthritis. About 15 percent of people with psoriasis develop psoriatic arthritis, according to the American College of Rheumatology.

Psoriasis is a skin condition characterized by red, itchy and painful patches of skin, according to the Mayo Clinic. Everyone sheds skin, though we can’t see it. In psoriasis, the “life cycle” of skin cells is sped up, causing them to build up (the patches of psoriasis).

Psoriasis is thought to be caused by an overactive immune system that attacks healthy skin cells. Your immune system fights off viruses and other infections to keep you healthy. In autoimmune diseases like psoriatic arthritis, the immune system mistakes healthy cells for foreign invaders like a virus or bacterial infection.

Some of my earliest memories are of my mom slathering my scalp in an ointment. Or shampoo. Or another cream. Or all three. I’d wear shower caps to keep the goo on top of my head as I tried to ignore the intense itching on my scalp. I imagined my psoriasis was screaming in agony from being bothered by the goo.

One treatment came after another. And then another. Though I was 4 or 5, I don’t remember anything working. I’d force myself to keep from scratching. Sometimes I’d scratch in my sleep and wake up with blood under my nails, on my scalp and pillow.

Anytime I went to the hair salon, my mom explained to the stylist that I had psoriasis, so she may see flakes and red spots. The stylist would nod in familiarity. I found most of my hair stylists were aware of the condition or had previous clients with it. They understood more than most.

After I was diagnosed with psoriatic arthritis at the age of 6, I began weekly injections of a medication designed to help both psoriasis and arthritis. I was one of the first kids to take the medication, so the doctors didn’t know what the short or long-term side effects would be. It had been approved for adults but use in children wasn’t established. My parents had to sign forms, stating they wouldn’t sue if I got sick or died.

After surgery on my wrist in high school (photo by Odi Opole)

At that point, my arthritis took center stage over psoriasis because it was progressing quickly. An autoimmune disease, like psoriatic arthritis, is dangerous if left unchecked. Though not fatal, damage to joints is irreversible and the pain gets worse. Mobility can diminish, and you’re more likely to develop a host of other chronic illnesses.

The medication improved my quality of life immensely. My pain diminished and my psoriasis mostly cleared.

Though I was doing better, the medication lowered my immune system response. I was more susceptible to sicknesses like the flu, strep, colds and everything else classrooms are a hotbed for. A common cold could keep me down for a couple of weeks instead of the typical four or five days.

Psoriatic arthritis is chronic, so I’ll have it for the rest of my life. I’ve had long periods of inactivity or “remission,” but I still have flares from time to time. Overall, my skin is relatively clear.

My medication has made it possible to pass as “healthy” to most people. This is why I sometimes hear ignorant statements from people like the newspaper girl in high school. What she and others don’t know is that I know what it’s like to have my body fight itself. Believe me, bathing is not the issue.