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."(VICTORIA GARDNER NYE)
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 myselfmy 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.
Next Page: How I handle it when people are rude
[ pagebreak ]How I handle it when people are rude
In Target the other day, a shorter woman was trying to reach a pack of gum. I asked her if she wanted me to reach it for her. She said, “Oh yes, thank you very much.” So with my hand that has psoriasis on it, I took the pack of gum and set it down in front of her. She looked at my hand, looked at me, and looked at the gum. She sort of smiled meekly, picked up the gum with a piece of clothing, andIm not kidding youhanded the piece of clothing to her friend and swapped out the gum for another pack. I was flabbergasted.
5 Ways to Handle StigmaHow to educate others and live with dignity Read moreMore about psoriasis
At times like that, Im at a loss for words. Its a hard balance, because you dont want to start an argument. For me, how I react depends on the person and how I'm feeling that day. Sometimes I feel comfortable enough to say to someone, “I have psoriasis,” and then explain the disease. But sometimes I feel better just walking away from it. I don't recommend insulting someone back, though many times I have been tempted to say some pretty awful things.
Even though Im an advocate for psoriasis, it still overwhelms me sometimes. I cycle from days of super self-confidenceYeah, go me! Im going to wear my “P” and you guys can go do what you wantto days when I feel defeated. Having to use a topical medication twice a day, in addition to other treatments, can be daunting. It takes a lot of time and effort and it can get old pretty quick, especially if your psoriasis is severe, as mine is. Then there are days where Im itching and bleeding on the sheets. Ive never been clear in 19 years; it can be very overwhelming and saddening.
Sometimes I just have to let it out
Ive actually been in and out of therapy since I was diagnosed. Therapy helped me to learn that its OK for me to be unhappy about psoriasis sometimes. I cant beat myself up about it. Youre allowed to have a horrible, bad day, and to want to throw things at the wall, and to be pissed off about it. Its important to have that. If you dont, it can cycle into depression. So go ahead and get pissed, throw things at the wall. Yell at the TV. Get it out of your system, because if you dont, its just going to sit there.
Its important to be able to talk about my problems. I can talk to my husband, I can talk to my friendsbut theyre not impartial. I know they can take on any pain I feel. There can be guilt in that, which is also the beauty of knowing people who have psoriasis. They get it. Then, when you do advocate, it feels like youre taking power back from the disease.