I'd never given the white patch of skin on my groin much thought. It was just a birthmark, a natural feature of the landscape. But one night, as I casually undressed to take a shower, I paused in the mirror to take a closer look at it. There it was, same as always, a pale little island on my body. Only, wait, didn't it seem a bit bigger this time?
Meticulously checking my body in the mirror is nothing new to me. I've written about my struggle with body dysmorphia here at Vox. My brain tends to obsess over perceived flaws in my appearance. But I had completely skipped over this.
I spent the next 10 minutes inspecting it. I studied its borders and noticed new formations, new peninsulas and gulfs. Yes, it was getting bigger. No, it wasn't a birthmark.
The little patch of skin, so unimportant just moments before, was suddenly the center of my universe. I went rummaging through my past trying to find my first memory of it, the first time I knew it was there. I thought that if I went back far enough, if I could prove to myself that it had been there from the beginning, I could assuage my anxiety.
I knew I'd had it since I was a little kid. Back then I thought it was a byproduct of being mixed race, as if the paint hadn't quite blended properly. I thought there were parts of me that were brown and parts of me that were white, like my body was a map of my two heritages and they had set up camp in different areas.
Turns out that's not how genetics work. But much like an actual map, the white island on my body was encroaching on the brown territory, and it was spreading fast. Panicked, I did what any other sensible adult would do: I asked the internet what was wrong with me.
After ruling out several rare forms of cancer, I landed on a plausible diagnosis: vitiligo, a condition wherein parts of the skin stop producing melanin. The body attacks its own melanocytes, the cells that produce melanin, resulting in white patches on the body.
My mind instantly went to Michael Jackson, probably the most famous case. This was before I read more about his struggles with the condition, and before I knew anything about what vitiligo really looked like.
In my ignorance, I thought I was going to turn completely white. I thought I would have to wear gloves and sunglasses and walk around with a parasol. I made an appointment with my doctor to have it checked out and quietly made plans to be an eccentric recluse the rest of my life.
My doctor diagnosed me so quickly and so confidently that my first instinct was to run away and hide, lest he find more things wrong with me just by looking at me. I barely even had time to take my pants off.
"Yep," he said, already reaching for an information pamphlet, "that's vitiligo."
And that was that. I had confirmation of my condition.
I walked out to the parking lot in a daze, picked up my phone, called my sister, and cried. I cried because this seemed supremely unfair. I don't believe in God, but I did that day because vitiligo felt like a condition that had been custom-made to torment me specifically.
I am a person who struggles with being mixed race and not looking "brown enough." I am a person with body dysmorphia, a person with a lot of anxiety when it comes to my appearances. So of course I would get vitiligo — a purely cosmetic condition that eats up my melanin. Who else but me?
My brain was coming up with a thousand different scenarios, all of them grim, for when the vitiligo spread. I imagined taking the subway to work and people on the train staring at me, feeling sorry for me. I imagined people patronizing me, calling me "brave" or "inspirational" every time I so much as hinted at being confident in my body. That was going to suck.
I imagined going out to the gay bars with my vitiligo. I imagined how I would be treated. Would anyone want me? Would people make fun of me? Would people use it against me if they were upset with me? "Who is going to love me?" I asked my sister on the phone. "Who is going to accept me?"
I was indulging in melodrama at the time. But the fears were real. As the white patch became white patches, as they crept upward and downward across my body, I wrestled with the imminent reality of being a person who looked different from other people. It was hell on my anxiety. It was hell on my body dysmorphia. I felt powerless, like my body was betraying me and I could do nothing to stop it.
After it was diagnosed, it spread even quicker, as if it had become emboldened after being named. It was terrifying. It was psychologically traumatizing, given how it was interacting with my mental illness.
Today, though, I feel fine, and that's something I'm proud to say, because I didn't think I'd be saying it so soon after my diagnosis. Getting to this point wasn't easy, and I had a lot to learn about vitiligo before I could go about the business of accepting it as part of me.
Anyone can get vitiligo.
When I first got my diagnosis, I thought it was because I wasn't taking good enough care of myself. I thought that maybe my diet was lacking something or my body was too weak to protect itself. As I mentioned above, I also thought my race had something to do with it.
This isn't the case.
Vitiligo affects 1 to 2 percent of the population, or approximately 50 million people worldwide. It occurs in people of all ages, races, and sexes, though it is most noticeable on people of color, particularly dark-skinned people. It is also more common in people with autoimmune diseases like lupus, overactive thyroids, and anemia.
Vitiligo can't be cured
No one really knows what causes vitiligo, though it could be an autoimmune disease where the body mistakenly attacks itself. There are doctors who say vitiligo is purely genetic, while others say it could be tied to emotional distress or sunburn. But whatever the cause, we know that vitiligo can't be cured at the moment.
At first, knowing there was no cure made me feel even more helpless. I thought I would just have to watch as the white patches expanded across my body like cream in coffee.
But in fact, it ended up making it easier for me to practice radical acceptance of my vitiligo. It wasn't going anywhere anytime soon. Scientists are studying the condition, and it could be the case that a process to reverse its effects is on the horizon, but for now vitiligo will have to be a fact of my life.
Treatments are available
Vitiligo is a purely cosmetic condition, but some do not want to live with visible depigmentation. For those people, there are options available to mitigate the effects of vitiligo and to slow down the spreading process.
Creams and corticosteroids can mask and return some color to depigmented patches of the skin. Excimer lasers, or light therapy, can also be effective in repigmentation, though the results may not be permanent.
Tattooing and skin grafts are other options, though skin grafts, which are expensive and not an option for most, carry significant risks. Grafting pigmented skin to depigmented areas does not always work (the grafted skin may become depigmented), and even if it does, the vitiligo may spread beyond the repigmented area, resulting in a cobblestone appearance.
Sunscreens and cosmetics are the most common option for people with vitiligo. Makeup can cover up depigmented areas, and sunscreen that protects from both UVA and UVB light is suggested for people with vitiligo.
Any discussion on treatment of vitiligo would be incomplete without mentioning mental health.
I had to take extra care to make sure my vitiligo did not negatively impact my mental health. Depression and anxiety are common side effects of vitiligo, and given my preexisting mental conditions I had to practice a lot of self-care to stay healthy. For me, that meant staying on schedule with my anxiety and depression medications and reading stories of people who found their vitiligo to be a positive experience.
I want to stress that while most of the above is about lessening the visible effects of vitiligo, I personally do not consider it a disorder, an illness, or a disease. In fact, I've come to think of vitiligo as beautiful.
Vitiligo can be beautiful
Take a look at the gorgeous Winnie Harlow, a black model with generalized vitiligo.
"Growing up, it was a fake it 'til you make it type thing," she told People. "I just decided, ‘You know what? I'm going to keep telling myself I'm beautiful until I feel beautiful.' And it happened."
Ever since my diagnosis, I can't tell you how many people have told me they find vitiligo to be unique and beautiful. Maybe some people are just saying that, but honestly, it was a sentiment I shared before I knew I had it.
I've seen vitiligo referred to as "war paint." I've seen people post pictures of themselves with it, and I was taken aback by how interesting and pretty their skin looked. I consider these things edifying now, and they helped carry me through the difficult phase, the phase where I was scared and hating my skin.
We all struggle with our appearances.
Vitiligo has made me rethink how I process bodies. It has made me rethink beauty, and made me rethink what I consider to be a "disease" or a "disorder."
My vitiligo has helped me realize that I am not alone in struggling with body acceptance. It has helped me realize that I was looking at other people and processing their bodies through a lens that needlessly othered and judged them.
Throughout our lives, we are programmed to accept constructs on which bodies we deem beautiful and which ones we consider unworthy. Most of us were taught that black skin is less beautiful than white skin. Most of us were taught that fat bodies cannot be considered attractive. Most of us were taught to strive for thinness or muscularity, depending on the gender norms.
It didn't matter if we were these things. If we were people of color or if we were fat. We received the same messages, and we internalized them.
Before my vitiligo, I, albeit on a subconscious level, did everything in my power to abide by these restrictive body norms. I saw myself as a work in progress as opposed to a person. I only saw which parts of me made the cut and which parts didn't, and I strove to change the parts that didn't.
Going about the work of dismantling this lens, difficult as it was, was the most therapeutic thing I could have done for myself. I didn't just look up examples of people like Winnie Harlow. I looked up people of all different backgrounds embracing their bodies. I looked up albino people, people who use wheelchairs, other people of color, all loving who they are and loving being in their bodies.
This looked like reading their essays and articles. This looked like showing their selfies some love. This looked like purposely, consciously changing the way I internally responded to the people I saw walking down the street every day. This looked like telling myself that I like the way I look, even if I didn't believe it some days. I told myself and told myself until it became second nature to think it.
When I did that, the possibility opened up. There was a way to love myself.
Vitiligo doesn't have to be a bad thing
"I'm like a rapidly gentrifying neighborhood," I told my friend the other day at dinner, and he threw his head back and laughed. I was proud of myself in that moment, because I never thought I'd reach the point where I could joke about it, where I would be so comfortable in myself that I could own it to that degree. But here I am, happy, even as my vitiligo continues to spread.
Today, I am patiently waiting for the white patches to show up somewhere my clothes can't hide them. I was told to check my hands, as that is where they'll probably show up next. When they do, there will doubtless be people who stare. There will be people who feel sorry for me, people who think there is something wrong with me, and even people who think I'm ugly.
But my vitiligo has encouraged me to steal myself back from the eyes of others. It has emboldened me to consider my own opinion first, because my body, like all bodies, is a subjective truth, and I have agency to be the first to interpret it.
There is nothing stopping me from considering my vitiligo beautiful. There is nothing stopping me from looking in the mirror at my skin and feeling not just okay with it but enchanted by it. If I were a flower, I'd be the one I'd pick. If I were a rock, I think I'd be a shiny one that I'd slip in my pocket and keep. I look interesting. I look different. That's a good thing.
Of course, it's not always easy to access that state of mind. There are days when my body dysmorphia flares up. There are days when I wish my vitiligo would just go away. On those days, the words "disorder" and "condition" creep up, and they inspire a lump in my throat. They make me scared.
But when that happens, I take comfort in the knowledge that there is a way to love my skin. There is a way to look at myself in the mirror and like what I see.
John Paul Brammer is a writer and journalist based in Washington, DC. He covers LGBTQ, Latino, and mental health issues.