Psoriasis Insights

How I Live With the Stigma of Psoriasis Every Day

Victoria Gardner Nye, 35, from Cambridge, Mass., has been living with psoriasis for 19 years. With the support of good friends, she came to accept her disease, and became an activist and advocate for more research and better treatment. That fight gave her hope and a support network of people who know exactly what she's going through.

"Youre allowed to have a horrible, bad day, and to want to throw things at the wall."
I was diagnosed with psoriasis when I was 17. I remember thinking, What's that? There was no Google back then, so I couldn't find any information. I was a freshman in college, and all I knew was that it was hard to start at a new school with scaly red patches on my hands, arms, legs, back, and neck.

People said that I had AIDS, or that I was a leper. Not to my face, but loud enough for me to hear. In the student union, people wouldnt put money in my hands; theyd put it down on the counter. It was really hard at first. I cried a lot.

I found comfort in friends...
I had a wonderful friend whom I went to crying one day. He looked at me, knowing full well that I had psoriasis and what it was. He stood up and yelled, “Oh my gosh, you have psoriasis!” and ran down the hallway screaming, which made me laugh. And I thought, Well, there you go. It's not going to get easier, so I need to live with it.

After college, I was lucky to meet other people who didnt care about my psoriasis. Having friends that you can trust makes it easier to go out socially. My husband doesnt mind. Its more about me. If he starts kissing my neck, my brain goes, Oh my gosh, what if he gets a scale in his mouth? But when you have something for 19 years, you come to terms with it. Psoriasis is a chronic disease, and I dont want to live my life feeling miserable.

...and then I took action
Up until three years ago, I had never interacted with other people with psoriasis, besides my mother. I became a patient advocate because I got tired of whining to myself—my pity party of one. In 2005, I saw that the National Psoriasis Foundation (NPF) was sending people to Capitol Hill to push for more research and better treatments. I decided I should go and do something instead of sitting around all day. So I went.

It turned out to be one of the most amazing experiences of my life. Now I am a leader for an NPF-affiliated support group in Boston, and I met my co-leader in Washington, D.C., that year. The support group is a huge part of my life. Its a comfortable place to be. You dont have to explain anything or be self-conscious that you're scratching your scalp all the time.

Plus, it helps me to deal with the stigma, because people do stare and strangers move away from me on the subway.

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As told to: Mara Betsch
Last Updated: October 01, 2008

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