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Please Know These Six Things about Vitiligo if You Don’t Have It

Please Know These Six Things about Vitiligo if You Don’t Have It

woman with vitiligo holds sunglasses

Vitiligo awareness is growing – there’s no doubt about that – but there’s still room for education in a world of significant misinformation and misunderstanding. That’s why we turned to our Instagram community and asked: What’s one thing you wish people knew about vitiligo?

It’s no surprise that most of the answers had to do with interactions with other people. As someone who has lived with vitiligo for more than twenty years, I know first-hand that you often have to deal with curious – and sometimes intrusive – questions, comments and stares. It can be awkward and embarrassing to say the least, but at times it can even be hurtful.

That’s why we’re taking action. To help raise awareness, we’re spreading the word. Here’s what our vitiligo community wants you to know:

Vitiligo is not contagious

First and foremost, vitiligo is not contagious. It cannot be transmitted by physical contact. And the white spots on our skin will not hurt you, nor will they turn your skin white. That answer is actually the number one response we received and it’s not hard to understand why. Can you imagine someone meeting you and being concerned that they might accidently touch you and end up looking like you? You might imagine that it wouldn’t feel very good.

Don’t assume that you know what it is

The white spots are not leprosy, burn scars, sun burn, cancer, bleaching or birth marks. And no, we’re not going to die because we have spots on our skin. Thanks for asking, though! Said with sarcasm. In all seriousness though – can you imagine being asked those questions about your own skin? Living with white spots take a lot of personal strength and confidence and no one likes to be told what else their non-curable condition looks like. If you’re going to ask, then just ask – and don’t suggest anything.

Don’t be afraid to ask

On that note, don’t be afraid to ask. As Stacy says, “When I do get a chance to explain, I load them with enough information to make them feel comfortable. Then they can pass it along [and] not be fearful or judgmental.” Kyra added, “I’d rather you ask…than stare. But I also see why they would be afraid of hurting my feelings.” In fact, a lot of people with vitiligo would rather have the opportunity to explain the condition and talk about it instead of having someone stare awkwardly or make assumptions.

Don’t assume that the person doesn’t like their skin

Pity isn’t always necessary – that’s something to remember. With a growing awareness of vitiligo and an increasing trend in self-acceptance for those with the condition, it’s not always the case that people with vitiligo don’t like their skin. In fact, a lot of people love their skin the way it is and some people would even rather not have a cure. Try asking the person how they feel about their skin before offering any sort of commentary.

Think before you speak – even well-intended comments could be insults

“You’re still beautiful.” It sounds like a compliment, but is it? “Oh, I never noticed.” How could you not notice? “Well maybe one day it can go away.” You might mean well, but you just confirmed that it needs to go away for the person to look okay. See how a few well-intended comments can actually hurt someone’s feelings? It’s a tricky topic, we know. But as Holly explained in her response, “Shying away from the topic makes me feel insecure about it.” In other words, pretending or offering pity compliments can just make the situation worse. Instead, listen before you speak and offer your thoughts honestly and respectfully.

Staring is rude – and obvious

Most people keep their vulnerabilities hidden, but that’s not a luxury that those with vitiligo have. Instead, our biggest insecurity is on full display most days of the year. And as you can imagine, the staring, gawking and comments can be unbearable. As Darcel commented on our Instagram, “I’m very, very white, not very, very deaf.” Another person added that she’s not blind, either. In other words, staring and making comments can be obvious – and harmful to the receiving party.

What else do you wish people knew about vitiligo? Share in the comments below!

View Comments (3)
  • That it can effect more than just my skin, and that yes I do know that I have it. I love questions and helping people understand, but I hate when the same person asks the same questions everyday. “Do you realize you have grey hair?? Why do you look like a cow?” I appreciate your questions but I don’t need that everyday for a year, thanks.

  • It may trigger other skin sensitive issues.
    Sometimes I take longer than usual to get ready because I am getting use to the idea that my appearance is changed, which means I take an extra effort to ensure I really feel comfortable in what I am wearing.
    Another comment is; “…lucky you are married then, the chances of a woman finding someone to love them when they are older AND with skin like that…gosh”
    Another comment is “….Lucky you aren’t ugly and have a slim build”
    Another “…Why do you cover up with make up? Just leave it, it’s you!” ( laughing as this is said)
    Another is “ Well if I had that, I’d get a tattoo, you should do that it would look great!”
    Another is. “…Well looks fade at fifty anyway”
    Another is, “ … Beauty fades, brains lasts forever “ Said by a work colleague who was very competitive and is a very competitive person.
    Another is, how people assume I feel sorry for myself and that this is my true personality type, which it isn’t and I don’t . Making these assumptions is infuriating, it’s reflective of others project what they think of me.

  • For myself- if I hear one more person tell me how someone they have heard of, having miraculously recovered or tell me to go and see this ‘spiritual’ person or have that ‘religious’ individual pray for me – I genuinely don’t know what I would do that person!!! Also, I’m sick to death of random strangers (always fully grown adults) coming right up to my face and wanting to interrogate me about my ‘choice’ of attire…No, I didn’t realise it was so warm- why am I wearing dress gloves and full sleeve turtle necks?! I realise this makes me sound somewhat mean but it would tire the patience of a saint. Leave people alone. If someone wants to engage in conversation with you about their very private lives; they surely will. I live with Vitiligo 24:7- I really don’t need a stranger in my face about it. Accept this is my reality- don’t try and change my convictions and provide me with pity and solace and ‘understanding’- this goes for medical practitioners too. My perception of my Vitiligo isn’t all in my mind- it’s very real and I walk a very thin path between coping and not coping with it. I need to find acceptance in my own way, in my own time. It may take me a lifetime to get there. I may not ever get there- but every day that I get up and put my ‘face’ on to face the world, is a day I didn’t contemplate I would be able to get through. I’m here- learn to be kind and listen to people when they tell you how they think and feel about their condition. Don’t attempt to ‘make it better’ by imposing your views and opinions. You have no idea how damaging your ‘well-intentioned’ words can be. It could be the final remark that breaks a fragile soul.

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