How I Stopped Letting Vitiligo Run My Life

The signs of vitiligo—a disease that drastically lightens the coloration of your skin—first appeared to me about six years ago. I was 29 and I was on an amazing vacation in Greece, beach hopping, mountain biking, and lounging in the sunlight. After my outdoor escapades, I came back to my and my boyfriend’s hotel room and noticed two curiously pale circles around my eyes.

At first, I attributed the whiteness to a pair of polarized-lens sunglasses I’d picked up at the airport before the trip began. Essentially, I thought it was a case of the ski goggle effect. It wasn’t a great look, but it was no big deal.

As I got more tan, my boyfriend playfully made fun of me for my raccoon eyes. We laughed about it together, but I caught sight of my reflection as we were packing—and, well, it was pretty shocking. The skin around my eyes was blazing white. Beneath the white patch, there was a galaxy of freckles running across my cheeks and nose. Nevertheless, I told myself I’d make use of some concealer and wait the tan out.

I thought it was a case of the ski goggle effect.

Six months later, I was still sporting raccoon eyes. And almost unnoticeable patches of depigmented skin had sprung up on my hands, arms, and thighs. Deep down, I had a gut feeling it was vitiligo (which I only knew about because Michael Jackson famously attributed the drastic change in his skin color to it) but I was totally ignorant to it aside from that.

Related: I Quit Drinking Alcohol For A Month—Here’s How It Went

And then my dermatologist confirmed it: vitiligo.

Vitiligo is caused by a lack of pigment (or melanin) in the skin. Basically, skin cells called melanocytes produce melanin, giving the skin its color. The white patches occur because there aren’t enough working melanocytes to produce enough melanin in the skin. It’s not clear why this happens, but some doctors believe it to be an autoimmune condition. It’s possible that stress and sunburn are triggers, too.

Staring at the shiny vinyl floor at the dermatologist’s office, I asked what could be done to reverse my condition. I naïvely assumed I had options, but I was gutted to discover there was nothing that could be done. Despite ongoing research, there just isn’t enough known about the condition right now, my doctor said. Ultimately, I was told me it was a “vanity issue” and to pick up some good makeup. I left feeling very alone. Granted, I was still in good health and, unlike people with darker skin tones, it was a little less noticeable on me. But the depigmented patches began to spread.

My mental health began to suffer because I just couldn’t adjust to how quickly and permanently my outward appearance had changed. I ended up becoming obsessed with makeup products that might offer some relief from my “vanity issue.”

I naïvely assumed I had options, but I was gutted to discover there was nothing that could be done.

I spent hundreds of dollars on makeup. Each new product sent my hope soaring, only to come crashing down again when it failed to deliver. The white patches were too noticeable. In time, I became paranoid. I’d touch up my makeup on the way to see my friends, and every time I left the house, I thought people were staring at me. If my family ever said I looked nice, I always assumed the compliment was pity-motivated.

Related: How I Went From Eating 5,000 Calories A Day To Putting Health And Fitness First

I walked with my head down, terrified of becoming someone who would scare little children away. “It’s really not that bad,” friends and family would say. But when your two-year-old niece innocently asks, “Why are your eyes like that?” you know it’s not invisible. Because kids are brutally honest.

I went from being someone who barely wore makeup to not being able to leave the house without it. A prison of my own making.

I walked with my head down, terrified of becoming someone who would scare little children away.

After skipping out on events and birthday parties, becoming somewhat of a recluse,, I knew I had to find a way to stop retreating from life. I needed to hold my head up high again, to not wearing makeup or not be the deciding factor in doing something spontaneous or fun. I had to stop wishing away my vitiligo because it wasn’t going anywhere.

Vitiligo
A picture of the author.

The journey towards self-acceptance has been challenging, but the support of friends and my partner has gone a long way. Joining vitiligo forums has also really helped, because simply speaking to others with my same condition has made me feel less alone and more sane.

Gradually, I found the courage to talk to the people in my life about it. Last year, on a vacation with friends, I wanted to enjoy the trip makeup-free and unworried. Sitting on the balcony overlooking the sea, I just blurted out: “Just in case you’re wondering why I’ve got white circles round my eyes, I have vitiligo.” They politely said they hadn’t noticed—which was hilarious and very British of them (ps, I’m British) —but it didn’t matter: I felt a lot better just by saying it out loud.

Someone recently asked me about my vitiligo. This time, I didn’t plummet into a spiral of despair like I definitely would have in earlier days. We chatted about it briefly and that was that. I was making progress. I was getting my confidence back. And, maybe most importantly, I was taking steps to normalize and demystify the condition.

Speaking to others with my same condition has made me feel less alone and more sane.

My vitiligo continues to spread each year that passes. Nowadays, I’m more curious (and less afraid) about how it’ll develop. I wear more sunscreen than the average person and I occasionally have the odd wobble in self-confidence, but I no longer drop eye contact when I meet the curious gaze of a stranger.

I practice unconditional self-acceptance, and I am sure anyone with any sort of disease, disability, or chronic illness would benefit from that. My vitiligo is very much a part of me, but it isn’t all of me.

Published by