Blog
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.
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 wouldn’t put money in my hands; they’d 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 didn’t care about my psoriasis. Having friends that you can trust makes it easier to go out socially. My husband doesn’t mind. It’s 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 don’t 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. It’s a comfortable place to be. You don’t 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.
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, and—I’m not kidding you—handed the piece of clothing to her friend and swapped out the gum for another pack. I was flabbergasted.
At times like that, I’m at a loss for words. It’s a hard balance, because you don’t 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 I’m an advocate for psoriasis, it still overwhelms me sometimes. I cycle from days of super self-confidence—Yeah, go me! I’m going to wear my “P” and you guys can go do what you want—to 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 I’m itching and bleeding on the sheets. I’ve never been clear in 19 years; it can be very overwhelming and saddening.
Sometimes I just have to let it out
I’ve actually been in and out of therapy since I was diagnosed. Therapy helped me to learn that it’s OK for me to be unhappy about psoriasis sometimes. I can’t beat myself up about it. You’re allowed to have a horrible, bad day, and to want to throw things at the wall, and to be pissed off about it. It’s important to have that. If you don’t, 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 don’t, it’s just going to sit there.
It’s important to be able to talk about my problems. I can talk to my husband, I can talk to my friends—but they’re 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 you’re taking power back from the disease.
An arsenal of cosmetics helped Liz Salemme, 24, of Riverdale, N.J., keep her psoriasis covered up. But it took months to get a correct diagnosis and the right treatment, and all that stress just made her skin condition worse
When I'd get a bad acne breakout in my teens, I'd joke that my skin was taking over my life. Little did I know that a few years later, it would actually come close to doing just that.
In 2002 I left home to start my freshman year at college. On Halloween, I came down with strep throat. I didn't want to spend the weekend cooped up in my dorm room, so I went out anyway.
A few days later, I woke up with dry spots all over the undersides of my forearms. They were pretty small—I thought it was dry skin or something strange I'd picked up in the communal showers. I put lotion on it and figured it would go away. But it didn't. The nurse practitioner at campus services told me I was probably allergic to something—my detergent, or maybe the water in the washing machines.
Soon it spread to my upper arms, chest, and back. I thought it was acne, but pimple medication made it much worse. Every morning I'd wake up, hoping it would have disappeared overnight. But it was always worse. I confided in my friends about how upset it was making me. They told me it didn't look that bad, but I knew they were just being nice.
I was misdiagnosed with a flesh-eating bacteria
When I went home for Thanksgiving, my parents panicked—that's how bad I looked. My mother took me straight to a doctor, who said I had a flesh-eating bacteria. She explained that I could have contracted it when I drank alcohol while sick with strep. She mentioned the word psoriasis in passing, but I was so fixated on the flesh-eating bacteria that I didn't second-guess her diagnosis. It did look like something was attacking my face.
I went back to finish the semester with a prescription for cortisone cream and an antibiotic. But two weeks later, nothing had changed. No matter what I did, it just kept getting worse. I'd slather thick lotion all over my body every night, and that helped to a degree. In the morning I'd spend 30 minutes in front of the bathroom mirror, covering my face with foundation.
I never used to wear a lot of makeup, and now I was having to set my alarm extra early so I could cover myself up before I left for class. I was constantly paranoid that my classmates were staring at me, so all of the stress from that—on top of my academic worries like final exams—was taking its toll. And the more stressed I got, the worse my skin became.
I referred myself to a dermatologist
At Christmas vacation, I went back to the doctor. She suggested I use a lot of Eucerin and Aquaphor. She mentioned the word psoriasis again in passing, but didn't press the issue. I googled the word when I got home, but none of the photos I saw looked like what I had.
I don't know why I didn't go to a dermatologist to begin with—perhaps because my doctor didn't seem concerned. But the condition was finally taking over my whole life, and I made an appointment with a dermatologist.
The dermatologist said he hadn't really seen anything like it before, and even he flirted with the flesh-eating bacteria idea. In hindsight, I think a possible reason I wasn't getting the right diagnosis was that I was putting on so much lotion that my skin didn't have the classic psoriasis scaly look. And I was covering it up with so much makeup, even when I went to the doctor.
But finally the dermatologist decided it was psoriasis and prescribed Olux Foam, a strong medication that literally melts into the top layer of your skin. After a few days of using it, the scales started to disappear, little by little. But I wasn't back to normal until March. Thankfully, I have stayed pretty much clear since then.
Psoriasis is not uncommon, and it should never have taken so long to get my case properly diagnosed. The whole experience made me really paranoid. And one important thing it taught me is that if I ever have a problem again, I need to go directly to a specialist.