It Happened to Me: I Have Psoriasis

For five long embarrassing years, I had been told that the reason my scalp shed gross white flakes all over everything was because I was a dirty little girl. Now, I discovered it was an undiagnosed genetically transmitted skin disease.

May 30, 2012 at 4:00pm | Leave a comment

It all started with a bottle of Winnie the Pooh shampoo.

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My older sister was out shopping one day and saw Winnie the Pooh branded shampoo and thought it was adorable. The bottle was wrapped to look like Pooh Bear’s body and the cap was a plastic mold of his head. There was also a Tigger Conditioner to match. 

My sister Colleen has always been obsessed with her hair, so she already had an entire bath tub’s worth of fancy salon branded products specially designed to make her hair flatter or curlier or bouncier depending upon her mood. She couldn’t add drug store brand baby shampoo to that specially formulated cocktail of hair products, but she also couldn’t resist the charms of Winnie the Pooh and Tigger, too. 

So, naturally, being that I was the 10-year-old kid sister at home, I got the Winnie-the-Pooh shampoo and I was in love with it. 

Then, after a few washings with it, I began to notice white, itchy flakes on my scalp.

My family just assumed I wasn’t washing my hair properly. To be fair to them, I was a pretty slovenly kid. I was more into reading historical novels than combing the knots out of my hair, so it was logical to think I also wasn’t washing my hair enough -- or that I was using the wrong shampoo -- or that I had dandruff.

So, my mom bought me Shop Rite brand Head and Shoulders and I dutifully washed my hair with it. I remember being so excited to be taking care of my presumed dandruff like one of the grown ups in the Head and Shoulders commercials. 

The flakes got worse. There were more of them, they itched more, and when I scratched them off, little sores opened all over my scalp. I was mortified.

When we went to our local hair salon, I received lectures about how I wasn’t washing out my shampoo well enough. I could see my stylist wince in disgust as she parted my hair and tiny flakes and sores and scabs were everywhere. It was all my fault and I needed to figure out a way to fix it.

Then one fateful day when I was 15, my mom was sitting next to me on the couch and as she watched me pull little itchy flakes of skin through and off individual strands of my hair*, she got a weird look on her face. “Oh,” she said, “you know something? I think your dad had the same thing you have with your scalp.”

“WHAT?” I said.

“Yeah, I’ll take you to my dermatologist. It’s dermatitis or psoriasis or something. I think one of your uncles has it, too.”

“WHAT?” I demanded.

“It’s genetic,” she answered simply.

For five long embarrassing years (arguably the five most long and embarrassing years of any female’s life), I had been told that the reason my scalp shed gross white flakes all over everything was because I was a dirty little girl who couldn’t wash her hair properly. Now, I discovered it was an undiagnosed genetically transmitted skin disease.

Words can not express how much I wanted to punch the world. 

I didn’t punch anyone, though. I can’t remember what I did. I think I probably put on a slightly less adorable cardigan and played No Doubt’s “Just A Girl” on repeat for an hour.

When you have any sort of disease, identifying it is the first hurdle and then living with the diagnosis is the second. 

Psoriasis is a genetic disorder that affects how skin cells form. Basically, most skin cells take almost a month to grow, live on the surface of your skin and then die. If you have psoriasis, your skin cells repeat this pattern in a matter of two to three days. This means  the skin cells grow on top of each other in plaques and then when they flake off, the skin underneath isn’t always ready to be exposed yet, so it’s raw and sometimes a plain open sore.

I once developed a few tiny plaques on my thigh when I was 17 and consulted my mother’s 1970’s medical books for visual reference on full body cases.  When I saw a photograph of a particularly gruesome case, I threw the book across the room and had a panic attack. While I was being extremely vain, there are some people who suffer from extreme forms of psoriasis that keep them bedridden and in constant pain. I’m lucky enough to not be one of those people, but now there are injections and other forms of medication to control this and eliminate it entirely.

If you’ve ever wondered why Leann Rimes seems so in love with wearing bikinis all the time now, it’s not just because she lost a lot of weight. She had full-limb psoriasis as a teen and felt the need to cover up her entire body growing up. Now, that she’s on medication, she has “normal” skin. The first thing I ever did as a teen when I finally got a cream to help with the sores I had on my hair line was to pull my bangs off my forehead. Just saying it’s totally the same thing.

Anyway, I’m one of the lucky ones who only has a mild form of psoriasis that’s on my scalp, hair line and occasionally around my ears. I spent my teens playing with various medicated shampoo, cream and foam cocktails designed by my dermatologist to sooth my scalp. Nizoral helped the most, but then my hair smelled like tar and had the softness of a Brillo pad. 

Since then, I’ve figured out which over the counter remedies work the best: Cortozone cream and Lush’s Dream Cream work the best to sooth and get rid of plaques around my hair line. I can’t use drug store shampoos unless they are sulfate-free because of the harsh mineral oils and chemicals that manufacturers pump into them. 

Every time I visit a new hair stylist, I have to feel a swell of nerves as they comb through my hair and massage my scalp. I used to apologize ahead of time for having a skin condition. Then, a few years ago, I stopped saying anything at all. I figured they were professionals and therefore just had to deal with it. I mean, I mention it if my hair is getting colored just so they know to be gentle, but in general, the stylists I’ve had as an adult have never had an issue with that.

The biggest thing I’ve learned though is to just, well, accept it. The more I obsessed over picking and at scratching my psoriasis, the worst it got. Also, my psoriasis gets a lot worse when I’m tense, so the calmer I am, the better. 

What made me hate having it for so long was the feeling that I was gross or ugly to other people. As I’ve gotten older, I’ve learned to like myself more. I’ve learned to surround myself with friends (and hair stylists) who don’t get wigged out by the fact that I have a genetic skin disorder. I’ve learned to manage it as it relates to my health and forget it as it relates to my vanity.

Also, thanks to psoriasis, I’m really, really, really good at washing my hair. Like, I’m fantastic at it. So, let me know if you ever need tips.

*When psoriasis plaques grow on the scalp, it’s often around the hair follicle, so even if they flake off, sometimes they don’t fall off your head because they’ve grown in a ring around a strand of hair. The best way to make sure they get off your head is to carefully hold them between your nails and slide them off the entire strand of hair. Yes, it is gross.