Health

Living With Vitiligo Is Life Altering

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By Jackie McDonald, as told to Hallie Levine

About 25 years ago, I was at the beach with my two young children. It was just another lovely day together playing in the water and sand. We walked over to the concession stand to grab lunch. I noticed a man staring at me. At first, I thought nothing of it — I was used to guys and their admiring glances. But this time, I realized he wasn’t gazing at me with appreciation, but with horror. I grabbed my kids and got into my car. When I looked at myself in the side view mirror, I was in total shock. Who was this woman with patches of white circling her mouth, lips, and eyes?

It was my first real moment grappling with living with vitiligo. All of a sudden, I’d gone from being a lovely young woman to someone I didn’t recognize. Thankfully, today I accept and embrace my vitiligo, but it was a long, hard road getting there.

Grappling With the Diagnosis

I learned I had vitiligo when I was 31, right after the birth of my second child. I had already been diagnosed with Hashimoto’s disease, which is an autoimmune thyroid disease. (The two conditions sometimes occur together.) I had gone to see my dermatologist after I noticed a white, nickel-sized spot on the inside of my wrist. I’d spent the summer at the beach and was very tan. In contrast, the spot showed up as a glowing white orb. It unnerved me.

The dermatologist was very brusque: he spent 2 minutes explaining that I had vitiligo and the spots would most likely spread to other parts of my body. I was confused and kept asking questions, but he brushed me off. It was clear that he thought he couldn’t “fix” me and wanted to move on to his next patient. He wrote me a prescription for steroid cream and walked out.

At first, the vitiligo seemed manageable. I dressed strategically, in long sleeves and pants. Then it spread to cover more than a quarter of my skin — my hands, elbows, legs, and back. But it didn’t really start to bother me until the vitiligo appeared on my face and makeup wouldn’t cover it. At first, I tried eyebrow pencils and powders, but I gave up when they didn’t do anything. Self-tanners were also too messy and difficult to apply to only my spots.

My vitiligo didn’t seem to faze my husband or kids, but it upset me. I wanted to keep it private. I wanted to present myself to the world as the person I was before the spots — that’s who I felt I was. I hated the fact that almost every time that I went to the store, I’d pull out my wallet and the checker would automatically stare at their hands. Even though they never said anything, I could tell that they wondered what was going on. I hated being that woman with vitiligo.

How I Moved Forward

One day, I accidentally spilled furniture stain on my arm. I was amazed to see that the color matched my skin and hid a white vitiligo patch. I decided then and there to create a nontoxic stain for skin to camouflage vitiligo. Over the next few years, I tried everything from hair dyes and henna products to food coloring and eyebrow pigments. Nothing worked, but I didn’t give up. In my research, I’d read comments on YouTube videos from these young girls who were devastated by this condition. To see them write that they didn’t want to leave the house, and worry that they’d never get a boyfriend, broke my heart. I did youth ministry, and I knew how easily teens and young adults could spiral into crisis. I wanted to help them.

Then I noticed an advertisement for Fake Bake’s self-tanner. I reached out to the company with a pitch for a product designed specifically for those with vitiligo. They got back to me that same day. A year later, Vitiligo Vanquish by Fake Bake was on the market. It’s been a life changer for me: I apply it twice a week on my spots with more frequent touch ups on my hands.

For me, finding a way to cover my spots has given me the confidence to do things like go into stores or shake hands without worrying about awkward stares or conversations. But I also recognize that some people don’t want to cover their vitiligo, and that’s absolutely fine, too. I’m not ashamed of my spots.  I just enjoy going out into the world as one color.

What I Want Other People With Vitiligo to Know

I’ve spoken to so many young girls who worry that they’ll never go on a date because they have vitiligo. I make sure I take the time to explain to them that if a guy rejects you because of some spots, you don’t want anything to do with him anyway. I’m single now, and while I don’t bring up my vitiligo on my first date, I make sure that a man knows before we get too serious. If my vitiligo scares him off, that’s his problem. I want to be able to swim in the ocean or go a couple days without my Vitiligo Vanquish without worrying about what some guy thinks.

But there’s also nothing wrong with covering up your spots if you want to. I get notes from people with vitiligo every day who are embarrassed that they want to “hide” their vitiligo. But sometimes, you don’t want to keep having to discuss your condition at work or want people to get to know you without focusing on your spots. Every person with vitiligo needs to make their own choice.

Regardless, I encourage anyone with vitiligo to embrace their skin. Vitiligo is beautiful. Let’s celebrate it, whether you choose to occasionally camouflage your spots or proudly display them openly.

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