America’s Next Top Model, a show ostensibly about judging people by their looks, is expanding the typical standards of beauty. Over the course of its many seasons, Tyra Banks’ reality competition has featured contestants who don’t fit into the regular supermodel standards: aspiring models who are transgender, bald, or even taller than 6 feet. A plus-size contestant won in season 10. But none of these contestants, even as fabulous as they were, affected me as much as the one who shares my skin disorder: Chantelle Winnie.
As Winnie explained so patiently throughout last year’s season 21, vitiligo is an auto-immune disorder whose sufferers lose pigment, which is a protective barrier for your skin. It varies in degrees but usually appears on extremities like hands and feet. More extreme sufferers have it all over their bodies, even their faces. The result is that their skin looks more like a cocker spaniel than a labrador. And the change is more obvious for African Americans. Winnie has a breathtaking and unusual symmetrical pattern, which Banks, who says she “discovered” Winnie on social media, called “symmetrical white fantasticness.”
I didn’t start seeing those white vitiligo spots on my skin until I was in my 20s. My mother had it on her hands and feet, and her father wore long sleeves most of his life to cover his spots. Out of 13 cousins, I believe I’m the only one who has it. I have olive skin, but it’s pretty fair, so in the winter I almost forget about it. This time of year, when I tan just stepping outside, it starts up all over again, and I discover new spots I didn’t realize I had. (Last year: a small horizontal oval on my neck, the size of a quail egg.) It’s mostly on my hands and feet but also on my knees, and it’s creeping up under the underside of my arms.
Even though mine has been a relatively minor case so far, I have nonetheless been subjected to pointed questions by young children (understandable) and idiotic questions by adults. I once ran into a friend of a friend who I hadn’t seen in a while, and she asked me if I was a burn victim. It still bugs me when I remember how meekly I answered her, explaining my condition. I wish I would have retorted, “What kind of question is that?” I sometimes believe people are hesitant to shake hands with me, as if what I have is catching. I also had a friend ask me, almost exasperated, “Haven’t you done anything about that yet?”
Believe me, I have tried. When my vitiligo progressed from tiny spots to larger patches, I examined all sorts of options. One involved standing in a tube like an idiot for 15 minutes a few times a week at a major university dermatology lab, with very little effect. On the internet, I found a link between vitiligo treatment and acupuncture. I learned to love my acupuncturist, who was very supportive and said that he had had luck with this kind of treatment. He told me that vitiligo sufferers have great degrees of depression and also higher suicide rates than average, which shocked me. I enjoyed the acupuncture (it certainly was relaxing), but it was also expensive, and I didn’t see much improvement.
A woman once approached me at a conference. She was a makeup artist and wanted to know if I would come to one of her classes to help her students learn makeup techniques for burn victims. It was the closest I’ve ever come to a modeling career, but I figured it was for a good cause. And it was a surreal experience, to say the least, to have a bunch of aspiring makeup artists dab my arms, legs, hands, and feet with foundation sponges. The teacher said as she welcomed me, “Look at you, you’re so great: You’re wearing short sleeves.” It was August. As her students blotted my skin, the teacher suggested that I could do a makeup treatment like this “for a special occasion.” I’m already married, so outside of wedding pictures, I’m not sure what occasion would be that special. Plus, it didn’t look that great, despite all their efforts. The only thing worse than vitiligo is a failed attempt to cover it up.
I visited one vitiligo support website after another, but instead of solutions for this so-far incurable condition, they offered platitudes: We should learn not to focus on physical appearance, true beauty is found from within, and so on. Like many people who work in an office, I spend most of my day looking down at my hands on my keyboard. So I futilely watched every day as they turned more from tan to white, and dreamed of a quainter era when ladies wore gloves.
All that said, there are worse diseases to have. Vitiligo doesn’t even hurt, unlike psoriasis, say, and although I am apparently more vulnerable to skin cancer due to lack of pigment, it’s not so hard to slather on sunscreen. Still, I wondered at one point, since vitiligo is hereditary, if I should even have kids. My college boyfriend’s sister, who I wasn’t even that close to, asked, “Would you rather have never been born?” Well, no. So I have kids. Part of my effort to “heal” my vitiligo was so that I would have some sort of solution for them if they wound up with a bad case of it later.