Facing the Doubt of Vitiligo
By Leah Antonio, as told to Hallie Levine
I was diagnosed with vitiligo at age 26. For years, I struggled with low self-esteem and self-doubt. Now, 15 years later, I’m able to accept and even thrive with this condition thanks to the support of my partner, the vitiligo community, and, most importantly, my two children.
Dealing With Diagnosis
When I first saw the spots of vitiligo on my body, I didn’t know its name, but I knew what it was. Both my mom and my aunt have the condition. I went to a dermatologist, who told me there was no cure and that he vitiligo would probably spread all over my body. I left her office in tears. I was young, confident, and all about having fun. I loved going to the beach and showing off my body in cute little dresses. Now, I was afraid to do that. I felt helpless and traumatized.
To make things worse, I felt like no one could help me with my self-doubt. Every time I told someone how I felt, they’d downplay it: “Oh, you’re young and pretty, and you should just be grateful that it’s not cancer.” Sure, they meant well, but I wanted people to listen to me and understand how I felt. I refused to look in the mirror, and I’d often cry myself to sleep at night asking, “Why me?”
It felt like anytime I tried to express my feelings to someone and get them to understand, they’d slap me in the face. I was crying for help, but no one seemed to be able to hear me. Even a therapist I once spoke to dismissed my feelings as I explained my hesitancy about wearing a bathing suit at the beach. Her reply: “What about people who are overweight? They get into bathing suits all the time.”
Facing My Doubt Head On
I was stuck with feelings of doubt and insecurity for many, many years. My vitiligo made me feel unattractive and self-conscious. I isolated myself from any activities that showed my spots. At my bridal shower, for example, while all my guests wore cute little sun dresses, I sweated it out in long pants. Then I became a mom. By then, my vitiligo had spread throughout my legs. Initially, I was so self-conscious that I
refused to take my children to the beach or the pool. But then I felt like the world’s worst mom. I decided then and there I would not let my vitiligo get in the way of raising my children. The first time I took them to the pool, I was mortified. I was convinced everyone was staring at me (although in hindsight, they probably weren’t). Then I saw how much fun my kids were having, and those feelings vanished.
A few months later, I was at the playground with my 4-year old son. I had decided to wear capri pants, which showed my vitiligo. Another child went up to him and asked what was wrong with his mom’s legs. My son just looked at him and said simply, “Nothing. God just made her that way.” A few weeks later, I was cuddling with my daughter in her bed when she said to me, “Mommy, I love your clouds.” It took me a few moments to realize she was referring to my vitiligo. It made me realize: My kids didn’t see my vitiligo. They just saw their mommy. If they could accept my body, spots and all, I could, too.
The Power of Community
My kids aren’t the only people who helped me overcome my doubt. About 6 years ago, I started to research more about vitiligo online. I discovered the website Living Dappled, and it was life-changing. I saw photos of women who looked like me, and I read their stories, which were so similar to my own. Then a couple of years later, I got an email that Living Dappled was looking for models for a photo shoot. I signed up — and it was one of the best things I’ve ever done. I put on a short dress for the first time in 13 years and walked over the Brooklyn Bridge, past throngs of people. It made me feel so empowered.
It also helps that I have the love of a supportive partner. After my divorce, I did not date for years. I was too self-conscious. But a good friend convinced me to go on my blind date. After about 2 weeks, I decided to show him my vitiligo. I told him he needed to see something, then I took my pants off in the bathroom and walked out with bare legs. He just looked at me and said, “That’s it?” He had no problem accepting me, spots and all.
As a teacher, I’m always talking to my students about the importance of self-acceptance. It’s so easy for all of us to think that there’s something wrong with ourselves, when in reality it’s these small flaws that make us individuals and unique. The most powerful thing you can do is tell yourself that you accept yourself, despite all your imperfections. If you do that enough, you eventually start to believe it. Once that happens, you’ve gone a long way toward facing self-doubt. After all, it’s how you see yourself that really matters.
I’d be lying if I said that I fully accept my vitiligo. But where it once defined my life, now it only plays a small supporting role. I’m a mom, a teacher, a life partner. My spots are part of me, not the whole me.
Leah Antonio, 41, a teacher and vitiligo advocate in East Brunswick, NJ.