What I’ve Learned After Living With Psoriasis for 50 Years | MyPsoriasisTeam

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What I’ve Learned After Living With Psoriasis for 50 Years

Written by Pamela Rosen
Updated on January 2, 2024

There used to be a commercial that decried “the heartbreak of psoriasis.” It was so ubiquitous that the phrase became a national joke, like “Where’s the beef?” or “Who let the dogs out?” If someone was crying or upset in school, it wasn’t uncommon to hear someone else say, “What’s the matter? Is it the heartbreak of psoriasis?” Oh, they had no idea.

I have never not known what psoriasis is. My grandpa has psoriasis, my mom had psoriasis, and at 10 years old — at the first blush of puberty — I had it, too. The back of my scalp was a mess. The solution, they told me back in 1972, was a salve that my mom had to apply to my scalp every night. The balm smelled awful, stained my clothes, and made my hair impossibly greasy. My mother wore plastic gloves when applying it on my head. If this stuff was so bad that my mom had to protect her hands while putting it on me, I wondered, what was it doing to my scalp?

The answer was “not much.” It made me miserable and an object of scorn because it looked like I never washed my hair. And through all of it, the psoriasis didn’t go away. Eventually, my mother let me give up. After all, she didn’t have to use that stuff on her knees and elbows. Psoriasis was here to stay, and I could do nothing about it. Since I always had at least one open sore somewhere, I often worried about infections, and to be honest, my first and only float in the Dead Sea was not pleasant.

My dermatologist, the great psoriasis innovator Dr. Eugene Farber at Stanford University, took a special interest in our family — it was he who first posed the idea that psoriasis is a genetic condition and not a skin abnormality. Still, he told me I could “give it to myself” by scratching my skin. When I was about 12, I decided to test the theory by purposely scratching my left ear after touching my scalp. I got psoriasis in my left ear and decided it was a good idea to listen to Dr. Farber from then on.

For the rest of my life, there was always some cream or spray in my daily routine. These products didn’t cure anything but could stave off flare-ups, so I was grateful for that — and for my long, thick hair. I felt lucky to have only scalp and ear psoriasis. My sister had enormous plaques all over her arms and legs, just as our grandfather had. My mom used to lie out in the sun for an hour a day, thinking the ultraviolet light would help. It didn’t.

To top it off, as we got older, we couldn’t help but leave “little bits of ourselves” wherever we sat — puffs of white dust decorated our cars, furniture, and clothes. The worst part of psoriasis was its evidence. To this day, I keep a small, USB-powered vacuum in my car. We’re shedding everywhere, and it’s incredibly embarrassing.

The idea that psoriasis is an autoimmune disorder didn’t show up until the mid-’80s. Suddenly, everything made sense. Autoimmune diseases, it turns out, are like potato chips. You can never have just one. By this time, my sister had developed multiple sclerosis, I had asthma, and our mother had psoriatic arthritis and — like me — a lifetime of thyroid disorders. Dr. Farber had been right and wrong at the same time: Psoriasis isn’t genetic; autoimmune conditions are.

It’s unfortunate, but not much about psoriasis has changed in 50 years. But you know what has? The world’s understanding of it. Now, everyone from hairstylists to children on playgrounds knows that psoriasis isn’t contagious, it isn’t the result of poor hygiene, and it’s nothing to fear. People now know that psoriasis isn’t a heartbreak. And that’s a better solution than any medication has been able to achieve in my lifetime.

On MyPsoriasisTeam, members discuss psoriasis from a specific point of view. Would you like to share your personal story to help others living with psoriasis? You can learn more about this paid writing opportunity from MyPsoriasisTeam here.

Members’ articles don’t reflect the opinions of MyPsoriasisTeam staff, medical experts, partners, advertisers, or sponsors. Content on MyPsoriasisTeam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

Updated on January 2, 2024
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Pamela Rosen is a copywriter from Northern California. She now lives in Orlando, Florida, where she participates in performing arts. Learn more about her here

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