What It’s Like to Live with Vitiligo

‘It’s such a sad and scary feeling to look down at my skin and not recognize it anymore.’

Vitiligo

Over the last few years, several top models have made it a point to represent and empower people living with vitiligo, a condition that causes the loss of skin color in blotches. “While growing up, I was teased, ridiculed and bullied and called names like cow, zebra and all manner of other disparaging slurs,” acclaimed model Winnie Harlow, who has this skin condition, said in a video recording before competing in a massive modeling competition in 2014. “The continuous harassment and the despair that it brought on my life was so unbearably dehumanising that I wanted to kill myself.”

But despite increased awareness of the condition — to the point where some have gone as far as suggesting it’s now in vogue — many of those living with vitiligo still feel similar to how Harlow did as a child. One woman on Reddit laments the ways in which developing the skin condition has impacted her confidence [sic]:

“I still wake up every morning thinking I look like I always did, and that it was just a weird dream. It’s such a sad and scary feeling to look down at my skin and not recognize it anymore, and I can’t help but take all the stares personally. I used to occasionally find people staring at me and know that it was because I looked good that day. Now, everyone stares at me, and I know it’s for a different reason. A guy asked me recently why I’d want to look like everyone else, but honestly, I’d kill for that right now. I’ve never liked attention or being stared at by strangers, even when it was because I looked nice. I certainly don’t like it now that I’ve got kids looking at me with fear or people doing double-takes when they see me on the train.”

The actual cause of vitiligo remains unknown, but doctors suspect that the immune system mistakenly attacks and destroys the melanocytes in the skin, and since melanocytes produce melanin — the pigment that gives skin and hair color — not having them results in patches of skin becoming lighter or white. This condition can develop at any point in life, although most people develop it before age 40, and the extent and rate of the color loss is largely unpredictable.

While vitiligo is virtually harmless in the physical sense (nor is it contagious), as we already know, it can certainly make people feel terrible about themselves. Plus, the development of a lighter skin tone can increase the risk of sunburn and related conditions. “With vitiligo, there is a higher chance of sun damage because the melanin is no longer there to protect skin from the sun,” one redditor with the condition writes.

Despite knowing relatively little about the actual mechanisms causing the immune system to go haywire, there are some promising cures in the works. Just last year, a team of Yale researchers were able to restore the skin color in two patients with severe vitiligo through a combination of medication and light therapy that prevents the immune system from attacking melanocytes. As this report states, “One patient saw near-total restoration of skin color on her face, neck, chest, forearms, and shins.”

Now, having effective cures is awesome, obviously. But as many people with vitiligo have made clear, the problem is less their condition than the way everyone else reacts to it. “Yeah, it sucks we look different than most people,” one redditor writes. “People are rude and have staring problems. You know what I do? I just stare at them back, dead in the eyes. They get uncomfortable, which is a tiny reminder on how they’re making you feel.”

Years and years of being called a “vitiligo sufferer” provoked Harlow to come to the same conclusion, one that she took to Instagram to express:

“I’m sick of every headline ending in ‘vitiligo sufferer’ or ‘suffers from vitiligo.’ Do you see me suffering? The only thing I’m suffering from are your headlines and the closed minds of humans who have one beauty standard locked into their minds when there are multiple standards of beauty!”

And of course, she’s 100 percent right. For anyone who might think otherwise, know that your standards are the only truly undesirable aspect here.