I Have Vitiligo. Here’s What It’s Like to Live With This Rare Skin Condition

My plummeting self-esteem wasn’t an unusual way to react to a vitiligo diagnosis. Even the NIH says that although the condition is neither life-threatening nor contagious, it is life-altering. It has profound psychological and emotional implications for many patients, says Nada Elbuluk, MD, assistant professor of dermatology in the Ronald O. Perelman Department of Dermatology at NYU Langone Medical Center. “I think the psychological component of the disease is a significant one that needs attention,” she says.

For people with vitiligo, learning to cope can be very difficult—but it’s essential. For me, it took months of complaining to family and friends and feeling sorry for myself to realize I needed to make a change. I met with a therapist, who helped me uncover deeper-rooted self-esteem issues that had nothing to do with my skin, and understand it’s completely normal to blame all of your problems and insecurities on one thing. I challenged myself to turn my focus away from my condition. I dove into my schoolwork, and decided to pursue a double major, even though I had previously been to scared to do so. I also tried harder to make friends at my school, and ended up meeting many incredible people who didn’t even notice my skin. Refocusing my energy helped build my confidence and prove to myself there was more to me than a few white spots.

One thing I had to get over was the idea that people may look at me and assume parts of my skin were pale white from a sickness or sun poisoning. That’s why Dr. Elbuluk’s believes the best way to help people with vitiligo is to increase awareness of the condition. Many people have no idea that the condition exists, and there is very little research funding available for doctors to better understand and treat it. “Educating people can go a long way,” Dr. Elbuluk says. “If more people know that it’s a skin condition, it’s autoimmune, and it’s not contagious, that education can help take away some of the stigma that’s been associated with it.”

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