By Jackie MacDonald, as told by Haley Levine
About 25 years ago, I was at the beach with my two young children. It was just another beautiful day together playing in the water and sand. We walked to the concession stand for lunch. I noticed a man staring at me. At first, I did not even think about it – I was used to men and their admirable looks. But this time, I realized that he wasn’t staring at me with appreciation, but with horror. I grabbed my kids and got into my car. When I looked at myself in the side mirror, I was completely shocked. Who was this woman with white spots swirling around her mouth, lips, and eyes?
That was my first real moment of living with Vitiligo. Suddenly, I transformed from a beautiful young woman into a woman I did not recognize. Fortunately, today I accept and embrace my vitiligo, but it has been a long and difficult road to get there.
I learned I had Vitiligo when I was 31, right after the birth of my second child. I’ve already been diagnosed with Hashimoto’s disease, an autoimmune thyroid disease. (The two conditions sometimes occur together.) I went to see a dermatologist after noticing a white spot the size of a nickel on the inside of my wrist. I had spent the summer at the beach and was very tan. In contrast, the spot appeared as a glowing white ball. It bothered me.
The dermatologist was very rude: he spent two minutes explaining that I had vitiligo and that the spots would most likely spread to other parts of my body. I was confused and kept asking questions, but he just ignored me. He clearly thought he couldn’t “fix” me and wanted to move on to his next patient. He wrote me a prescription for a steroid cream and came out.
At first, vitiligo seemed to be manageable. I wore elegant clothes with long sleeves and trousers. Then it spread to cover more than a quarter of my skin – my hands, elbows, legs and back. But it didn’t really bother me until the vitiligo appeared on my face and the makeup didn’t cover it up. At first, I tried pencils and powders, but gave up when they didn’t do anything. The self-tanners were also very messy and hard to apply to just my areas.
My vitiligo didn’t seem to bother my husband or my kids, but it did. I wanted to keep it private. I wanted to present myself to the world as the person I was before the spots – that’s how I felt. I hated the fact that almost every time I went to the store, I would pull out my wallet and the checker would automatically stare at their hand. Although they never said anything, I can tell they wondered what was going on. I hated being that woman with vitiligo.
How did you go forward
One day, I accidentally spilled a furniture stain on my arm. I was amazed when I saw that the color matched my skin and hid my vitiligo white spot. Then and there I decided to create a non-toxic patch of skin to hide the vitiligo. Over the next few years, I experimented with everything from hair dyes and henna products to food coloring and eyebrow dyes. Nothing worked, but I didn’t give up. In my research, I had read comments on YouTube videos from these young girls who had this condition. Seeing them write that they don’t want to leave the house, and worrying that they’ll never get a boyfriend broke my heart. I’ve served youth, and I know how easy it is for teens and young adults to get caught up in a crisis. I wanted to help them.
Then I noticed an advertisement for a Fake Bake self-tanner. I reached out to the company with a product offering specifically designed for those with Vitiligo. They came back to me the same day. A year later, Vitiligo Vanquish by Fake Bake appeared in the markets. It’s been life-changing for me: I apply it twice a week to my areas with more frequent touches on my hands.
For me, finding a way to cover my own places gave me the confidence to do things like go to the stores or shake hands without worrying about awkward stares or conversations. But I also realize that some people don’t want to cover their vitiligo, and that’s perfectly fine too. I am not ashamed of my points. I just enjoy going out into the world as one color.
What I want others with Vitiligo to know
I’ve talked to a lot of young girls who worry that they won’t go on a date because they have vitiligo. I make sure I took the time to explain to them that if a guy rejects you on some point, you don’t want to do anything with him anyway. I’m single now, and while I don’t talk about vitiligo on my first date, I make sure a guy knows before he gets too serious. If vitiligo scares him, this is his problem. I want to be able to swim in the ocean or go a couple of days without a vitiligo rodent without worrying about what someone thinks.
But there’s also nothing wrong with covering up your spots if you want to. I receive feedback from people with vitiligo every day who are embarrassed that they want to “hide” their vitiligo. But sometimes, you don’t want to keep discussing your status at work or you want people to get to know you without focusing on your areas. Each person with vitiligo needs to make their own decision.
Regardless, I encourage anyone with vitiligo to embrace their skin. Vitiligo is beautiful. Let’s celebrate it, whether you choose to hide your sites occasionally or proudly display them publicly.