What It’s Really Like to Live with Vitiligo

It’s hard to explain exactly what it’s like to live with vitiligo. And even when I do, it’s not always understood. Perhaps that’s why I’ve heard so many others with the condition say that you only truly understand vitiligo if you have it.

Vitiligo is a physical disease – you lose your pigment, which creates white spots on your skin that can burn more easily in the sun. Yet what’s not so obvious is the emotional and mental distress that can come with vitiligo because of declining self-confidence, social stigmatization and depression. And that part of living with vitiligo is largely invisible – or at least, only as visible as you let it be.

This is my attempt to provide a window into what it’s really like to live with vitiligo. It’s not meant to be a pity party, and I’m not speaking for everyone with vitiligo. This is just my story, told in the hope that the world might have a little more insight into the everyday life of someone living with vitiligo.

You constantly worry about what’s going to happen next

There are a lot of unknowns in life – where you’ll go to college, what kind of job and career you’ll have, if you’ll ever find true love. But when you live with vitiligo, there is another unknown that is even more unnerving, because you don’t know what you will look like in one month, one year or ten years. Most people take that part for granted, and understandably because age is often the biggest variable for your appearance. Yet I’ve spent my life worrying about what color I will be. Today, I’ve lost 100% of my skin color, going from tan to spotted to fully pale. And even still, there are signs that there is more to come. My hair started to lose its color in college, but the white strands are appearing more aggressively and the color in my eyebrows is starting to turn white. Will I lose that too?

You overanalyze your closet – because clothes are your only chance at crafting a first impression

For most of my life, it’s been obvious that I have vitiligo. While it started on my back, it quickly spread to my knees, elbows and hands and has continued to expand from there. I couldn’t control my skin and because of that, I couldn’t control a big part of how people see me. But I could control my wardrobe – and that’s why I turned to my closet. My family knows I’ve always been weirdly obsessive over my clothing choices. While it was certainly vanity in the sense that I was worried about how I look, it was also more than that. Clothes became my outlet of expressing myself. It was my only chance to give someone an impression other than seeing “the girl with weird spots.”

You feel anxious when meeting new people

What’s the first thing that happens when you meet new people? You shake hands. What if your hands are covered in white spots? Believe it or not, some people won’t want to shake your hand. Or, if they do, you feel the need to explain the spots on your hand. Can you imagine being in that situation? Can you imagine feeling the need to explain the way you look – as if it’s a problem, as if you are apologizing for yourself? The situation can be awkward at best. It can also unleash a flood of emotions that come with vitiligo – a quick reminder that you aren’t “normal” and that you don’t fit in.

You feel alone and misunderstood

My husband gets anxious every time he finds one white hair on his head and yet the other day, when I told him that I realized that I could still lose the color in my lips, his reply was this: “You’ve lost everything else, what’s the difference?” Now, I will pause here to say that my husband is one of the most good-hearted, caring people I know, and he loves me more than you can imagine. So while his light-hearted comment caught me by surprise, it was also familiar – because this is exactly the type of misunderstanding that I’ve experienced time and again with vitiligo. And it’s the same story that I hear so often from others living with vitiligo. While I’m filled with pain and fear, the other person can’t actually grasp the weight of what I’m feeling. And when your own partner, best friend and family can’t understand the pain you’re feeling, how could anyone else?

You spend more money on makeup and tanners than you’d like to admit

Tanners. Spray tans. Foundations. More foundations. I don’t know how much I’ve spent on cosmetics and products to cover my skin over the course of my life, but it’s more than I’d like to admit. At one point, spray tans were a part of my budget right next to car payments, Netflix and utilities. I would drive to the local salon to get a spray tan every Thursday night so the tan was fresh for the weekend. Today I use a self-tanner at home and apply it almost once a day for touch ups. Sure, I could choose not to cover my skin, and I also recognize that plenty of people without vitiligo spend the same type of money on these products. The point is that for many, this is part of living with vitiligo – and a bad spray tan or foundation can make or break your day.

You worry about getting makeup on everything

Right along with spending money on makeup is the issue of getting foundation or tanner on everything you wear – or touch. I used to have “tanning sheets” to sleep in because the tanner would come off on the sheets while I slept. I always bring my own towel to hotels – it’s dark gray – because I worry about getting my makeup on the pristine, white towels. I typically don’t wear white clothing or shirts with collars because makeup will rub off on it. And last but not least – I always hold my face away from my husband when I hug him, so my makeup doesn’t rub off on his shirt. He always teases me for being “the most awkward hugger in the world” and we laugh and go about our day.

You seek shade everywhere you go

Even with strong sunscreen, outdoor activities can be difficult when you live with vitiligo. I’m in the season of life when I get invited to multiple weddings a year – it’s a beautiful, joyous time of celebration and I couldn’t be happier for those finding love. Yet every time I get an invitation, my first question is this: Will there be shade at the ceremony? Unfortunately, the current trend is to have wedding ceremonies in fields, without any type of shade or cover. So naturally, I’m the girl in the back row, hiding under an umbrella and counting the minutes until the ceremony is over – and hoping the photographer can cut my big bulky umbrella out of the pictures.

You occasionally have panic attacks

For a few years, I was having panic attacks twice a year – at the beginning and end of the summer, just like clockwork. Winter had become my “safe space,” a time to cover up head to toe and largely be “normal” again – free from staring eyes, curious questions and even my own anxiety. So when summer came around and I had to leave the house for the first time in shorts or a dress or anything more revealing, I would lose it. There was usually a trigger – like a crowded event or the first beach day of the year. It would start with anxiety and despite the efforts to calm myself, the panic would rise until I was sobbing on the floor, spiraling back into the questions that have haunted my mind for two decades – Why me? Will it ever stop? Is this really my life now? After a while, the sobbing would stop, I would wipe away my tears and find the strength to get up and face the day. The rest of the summer, although consistently anxious, I could have a good attitude – until episode two. Eventually, the stress would reach another boiling point towards the end of summer when everything took a toll and I was just emotionally exhausted. In this case, the trigger could be small – one more stare, one wrong statement or just looking in the mirror and I would lose it all over again.

You wonder, “why me?”

I’m the oldest of four children in my family – and the only one with vitiligo. Why me? Why did I have to get this disease when my sisters and brother are blessed with beautiful skin? Only 1% of the world’s population has vitiligo. It turns out, I finally won the lottery – but it isn’t the lottery you want to win. You only get one life – and vitiligo has taken over mine. I’ll never get to go back and re-experience high school or college without vitiligo. I often wonder how my life would have been different. Would I have more friends? Would I do things differently?

You experience skin envy – especially in the summer

I hear people talk about summer vacations, pool days and beach trips with such excitement – and I wish I could feel that. Instead, all I feel is anxiety. The feeling has gotten better over time. In fact, this year is one of the first that I’ve felt excited about summer. But I’m also 100% depigmented and life is easier when you don’t have spots. But for years, just the mention of pool days, bikinis or beach vacations would make me anxious. I was jealous of other girls who would gush about their upcoming trip and their newest swim suit. Instagram was – and sometimes still is – hard to look at in the summer as my feed fills with poolside bikini photos.

You wonder if anyone will ever fall in love with you

I met my husband a few years ago and we tied the knot this past September surrounded by friends and family. He knew me just at the tail-end of my spots, as vitiligo was taking over the last of my natural skin color and it’s never bothered him. In fact, my spots never bothered any of the guys I dated. But that didn’t stop me from worrying about it. There are enough things to obsess over on a first date, let alone the fact that you have white spots all over your body. And in today’s world of online dating, when you don’t meet in person, it can be unnerving to try to figure out how to bring it up.

You deal with people staring – every time you leave the house

Can you imagine being stared at everywhere you go? And I mean everywhere. There was a period when I couldn’t leave the house without being stared at – blatantly. Despite the kind words of my friends and family, the stares were not because I was beautiful. It was mostly curiosity and I understood that. But curiosity or judgement, the looks were not only a rude reminder that I was “different” but it often cut straight to my confidence, taking a piece every time. I think most people can relate to not liking the way they look. But I’m willing to bet that most people don’t have to deal with people peering at them like they’re a circus exhibit every time they leave the house. That kind of reaction would take an emotional toll on anyone.

You field intrusive and rude questions

I’ve always been amazed at what people would say to me when I had spots. Some of my favorites were questions about whether I was in a fire or car accident. How do you react to that? Do they have any idea how that can make someone feel? You just said that I look like I was in an accident. Perhaps the most entertaining is when people are convinced that there is a cure for it and I just need the right medicine. I’ve lived with vitiligo for 20-some years – I think I know something about the disease.

You dream about the day it might all go away

For twenty-some years, I was obsessed with the idea that my vitiligo would disappear one day. Obviously, that was a ridiculous thought – my vitiligo was incrementally taking over my body. Not to mention, vitiligo doesn’t have a cure and I wasn’t pursuing treatments. And yet, I was so miserable that all I could think about was this fantasy of one day being able to walk outside and not be stared at. Turns out, my spots did finally go away – they just took over my body.

What’s your experience with vitiligo? Tell us about it in the comments below.