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My Vitiligo Doesn't Define Me. I Define Me.

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I have vitiligo.

For those of you who don’t know what vitiligo is, it is a disorder (possibly autoimmune) in which white patches of the skin appear on different parts of the body. This happens because the cells that make the pigment in the skin are destroyed (National Institute of Arthritis and Musculoskeletal and Skin Diseases, 2014). To put it simply, I am slowly losing the skin color I was born with. The cause is unknown, but it appears genetics may play some sort of role as both my mother and my grandfather have it.

The first white patch I ever noticed I contributed to a scar. I was 21 years old, it was July and my skin had started to show some color from the sun. The patch was perfectly circular on the knuckle of my right index finger. As someone who used to competitively show horses, I assumed it was an old injury from corking (putting metal studs in their shoes to prevent slipping on grass), as this was the prime location for it. Then I started to get another, and another. My right hand was affected first, but my left hand followed soon after. Noticing this symmetrical balance was when I knew something wasn’t normal. I grew up knowing what vitiligo looked like. I had watched how it symmetrically snaked its way around my mom’s body. I went to the doctor and got the confirmation of what I already knew — I have vitiligo.

The diagnosis hit me like a brick wall, even though I was expecting it. I was upset, I was angry, but, most of all, I was scared. I knew I was going to physically watch my skin, the skin I grew up with, the skin I knew, the skin I loved, change. I was worried people would view me differently, make comments, stare, and not want to associate with me. I worried about how I was going to look in pictures; hell, I even worried about the patches glowing in the dark (they don’t, by the way, in case you were wondering). I spent my whole life trying to fit in, and now I was thrown something that automatically caused me to stand out.

I spent a huge chunk of the winter in denial. I said goodbye to my sun-kissed skin for the season and went back to only being able to notice the patches in specific light. They became a huge point of insecurity for me, and I spent hours upon hours researching ways to cover them up, or to see if there was any way to tell how fast they would spread. I did learn how to cover them up. I didn’t learn if there was a way to tell how fast they would spread, or if I could slow them down or stop them. My hope of finding a miracle cure grew thinner and thinner with the more research I did. The disorder presents itself differently in everyone. Some people may only have one patch, and some might have one specific area affected. For some people it may only affect one side of the body, and for others it can even suck the pigment out of your mucous membranes, hair, and iris.

I’m now 22. It’s now almost a full year since I involuntarily welcomed my first patch of vitiligo. I’m looking down at my hands as I type this and see white patches against the starting stages of a tan. My right hand still has more patches than my left, and the eyelashes on my right eye are starting to show snow-white tips. I still haven’t fully come to terms with the vitiligo and the changes it constantly brings, but I don’t dread them like I used to. My vitiligo hasn’t changed me, and the people who know me know that. And I’ve come to realize that if others are going to judge me based off something I cannot control, they are not people who deserve to have me in their lives. I have vitiligo, and although I think it will always be a point of insecurity for me, I am learning not to let it dictate how I view myself. And I know the day I find a patch on my face for the first time, I might have a complete breakdown. But I am learning that’s OK. I am striving every day to love the person I am based on her kind nature, and her compassion, and that has nothing to do with the patchwork quilt her skin has become. My vitiligo may never spread past where it is now, or it may take over my entire body inch by inch, but it doesn’t matter either way.

These white patches don’t define me. I define me.

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Thinkstock image by daisy1344

Originally published: July 17, 2017
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