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How My Psoriasis Diagnosis Helped Me Release Years of Shame

By Julie L. Whitehead
November 09, 2021

Waking up one morning in my thirties with my neck on fire from painful, livid red sores was one of the best things that ever happened to me. I went to a dermatologist and was diagnosed, finally, with scalp psoriasis—an autoimmune disease affecting, in my case, the scalp and neck.

That wasn’t the start of my journey with psoriasis. When I was in the fourth grade, I started noticing that I was scratching my head a lot. I would be reading a book and find that my right hand was scratching my scalp, usually at the very top of my head. Soon, I was pulling scabs off my head—strange, silvery scabs that didn’t look like typical dry skin.

The sores moved down to my neck, and soon my mother noticed them when she washed my hair. She took me to the doctor, thinking I had ringworm. They tested for it and determined that I needed to see a dermatologist. After cutting chocolate, dairy, and caffeine from my diet and slowly reintroducing them, it was determined that I wasn’t allergic to any of those. The doctor told my mom that I had dandruff and needed to use a mild dandruff shampoo every other day.

The sores, however, got worse. My mom was trying hard just to get the shampoo through my thick, black mane of hair. After much deliberation, my dermatologist recommended I use a coal tar shampoo, brand new to the market, for controlling what he was still calling dandruff. It was so strong, he advised using it just twice a week, and it burned my scalp with each use.

Soon, we could no longer afford frequent trips to the doctor, and my mom started improvising. She began washing my hair daily, using the coal tar shampoo. I would cry when it got in my eyes and burned them, too. But slowly, the dandruff improved, and at age 15, she let me start washing my hair by myself, thinking that I was finally old enough.

The coal tar shampoo, while painful, was effective, as long as I used it every day. If I skipped even one day, flakes would appear on my shoulders, and my mom would shame me. She would tell me that I wasn’t washing my hair well enough, wasn’t brushing it enough, or that I wasn’t spending enough time in the sun to dry out my oily scalp. She would say I was eating too many sweets, or that I was otherwise not taking good enough care of myself to stop the flakes from adorning my shoulders.

Finally, in my late twenties, my scalp seemed to develop an immunity to the coal tar shampoo. It was no longer working, and I could not control the flakes with any other lighter, less-medicated shampoo. It never occurred to me to go to the doctor until that day I woke up with the painful sores.

After my diagnosis, I carefully read the handouts the dermatologist gave me about psoriasis and was ready with questions at my follow-up appointment. I knew, now, that my skin was in high gear with an immune response, actually overproducing skin cells too quickly for me to shed them normally.

What could I do? Medicated shampoos were recommended for cases like mine that are limited to the scalp and neck.

Does brushing help? Only to break the plaques free so they can be washed away.

Did it matter what I ate? Not definitively, according to current scientific research.

Did I need to be out in the sun to help it? UVB rays may, at times, help, but with hair as thick as mine, the effect was likely negligible.

Was it my fault? Definitely not. Psoriasis is genetically inherited.

The answer to my final question caused a wave of relief. Finally, I could let go of the shame of having psoriasis because the disease said nothing about me and how I took care of myself. Genetic research has revealed that as many as 25 genes may interact to determine who has psoriasis and who doesn’t.

I am now on a regimen of three different shampoos—one with salicylic acid, another with mild coal tar, and another with ketoconazole, an antifungal medication. I wash my hair Monday, Wednesday, and Friday, each time with a different shampoo to combine the best of all the OTC treatments available.

While I still have mild symptoms, the relief I felt after my diagnosis was not in the treatment—it was in losing all the accumulated shame and low self-esteem caused by years of thinking I was somehow responsible for how my skin reacted to my disease.

Since my diagnosis, I’ve learned these important takeaways:

  • Psoriasis is a disease, not a skin-care failure.
  • A doctor can help devise the best treatment plan for your disease. Health care is not a DIY project when you have an autoimmune disorder.
  • Be wary of old wives’ tales about your disease. While sunlight and healthy eating can improve your overall health, they probably won’t cure psoriasis symptoms by themselves.
  • Your attitude toward your psoriasis can be helpful or harmful—and helpful is better!

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