The Girl Behind the “It’s Called Vitiligo Tattoo”

Sitting down to talk with Tiffany Posteraro – now Tiffany Grant as she married her fiancé last September – you feel like you’ve found the friend you didn’t know you had been missing your entire life. The 25-year-old New Yorker is bubbly and open, happy to talk about life in Brooklyn with her husband, two corgis and cat.

Today she’s busy taking psychology courses and running her own online dating consultation company, Perfect Penguin Consulting. But you likely know her as the girl with the “It’s Called Vitiligo” tattoo.

Last summer, her story – and the picture of her tattoo – went viral, reaching Daily Mail, Woman’s Day and Buzz Feed. Since then, she’s been featured alongside people like Winnie Harlow in Marie Claire, Cosmopolitan and Women’s Health Magazine – becoming one of the faces of vitiligo for girls around the world.

So what is it like to have your story go viral overnight and what’s happened since? We sat down with Tiffany to find out.

LD: When did you first get vitiligo?

TPG: I got vitiligo when I was seven, or at least that’s when the first spots appeared. I had fallen and scrapped my knees, and as they healed, there were vitiligo spots. We went to a dermatologist who said it was just a rash and gave me an anointment. Obviously, the ointment didn’t work, but we never went back to the dermatologist. Then I was in the grocery store with my mom one day and someone came up to me and told me that I have vitiligo. It was the first time I had even heard the word “vitiligo” so I looked it up. I was 11 years old by then.

LD: Was it hard for you to grow up with vitiligo?

TPG: Yes, my spots have always bothered me, but I’ve handled it in different ways. It got more difficult when I entered middle school. I used to lie – I know, lying is bad – to new friends or boyfriends and tell them that no one had ever had a problem with my skin. I thought that if they assumed everyone else had accepted my condition, then they would have an easier time accepting it themselves.

LD: What was your inspiration for your tattoo?

TPG: Well, my husband Jonny has always told me that I’m beautiful the way I am and that I shouldn’t hide my skin. So he planted the seed in my head that I needed to find a way to accept my skin.

Then I bumped into someone with vitiligo at IKEA. I was so excited and ran up to her and we started talking – she was the first person with vitiligo I had ever talked to. She told me, “you have vitiligo, it doesn’t have you.” And I thought about that and realized that I let vitiligo control every moment of my life – my clothes, who I’m with, where I’m going – I think about my skin constantly.

So then I got to thinking about how I can take what she said and embrace it. I had the idea to put a tattoo on my arm, but I wanted it to be something that people could read quickly. So I settled on “it’s called vitiligo.” I spoke to my tattoo artist and we picked the font and size and I put it on my arm so the words would run straight across my spotted skin.

LD: Is this your first tattoo?

TPG: Oh no, this was my 13th tattoo. My first tattoo was a phoenix when I turned 18. I love tattoos – they tell stories for me and I view them as artwork. When I got my first tattoo, I was still having trouble accepting my skin condition, and I wanted to put something on my body that I chose to put there. And that’s what tattoos do for me – they let me control what my skin looks like.

LD: How has the tattoo helped you live with vitiligo?

TPG: The tattoo is my invitation for other people to ask me questions about my skin. My vitiligo is their first impression of me, and people tend to fear what they don’t know. But I don’t want my skin to be a barrier to people getting to know me. So by putting the name of the condition on my skin, they’ll either know what it is or they’ll be invited to ask me about it.

It’s a comfort blanket for me in a way. I care a lot about what people think about me – I definitely have sensitive skin in that sense. I react to how people perceive me. And I’d rather have them ask me about my skin than assume things in their head.

LD: You went from getting a tattoo to girls all over the world knowing your name. How did that happen?

TPG: Well, I got the tattoo in the spring of 2015 and shared it on Instagram. The Press Association must have found it, because they reached out to a vitiligo support group on Facebook, who reached out to me. So we got together to do the story and photos, but I didn’t hear anything about it after that.

About a month later, I was babysitting and was sitting in the living room of the little girl’s house when my phone started buzzing. I took a quick look at it and saw that my friends were tagging me in articles over and over again. I also had a ton of text messages from people telling me that they had seen the articles. That was the first time I heard about it.

LD: How did it feel to have your story go viral overnight?

TPG: It was terrifying. I honestly didn’t know how to react at first because it was a weird feeling for me. I have always been inspired by people like Wininie Harlow, but I had never been the person to inspire others. So it switched all of a sudden and it was exciting, but also a lot of responsibility.

I got – and still get – a ridiculous amount of messages from people every day who have read the story and want to tell me how much it meant to them. I got hundreds of phone calls, emails and Facebook messages when the story went out, and I made sure I wrote back or spoke to almost every person who messaged me.

LD: Did you have any negative feedback to your story?

TPG: You always have that person who writes mean things. My husband always tells me not to read all of the comments that go with the articles. But I do anyway and I end up crying, and he has to make me feel better and remind me to read back over the positive comments.

LD: How do you feel about your picture being everywhere?

TPG: You know, I had never been in a bikini in front of anyone other than my family and husband and all of a sudden that picture was all over the world. It was the scariest thing for me. I had always found creative ways to cover my spots when I was at the beach, but the photographer wanted a picture of me in my bikini so they took that picture in my living room.

LD: Do people still comment on your tattoo or reach out to you?

TPG: Oh yes, all the time. I still get messages from people with vitiligo almost every day. I’ve had a handful of people reach out and ask if it’s okay if they get the same tattoo – of course I say yes. And just yesterday, I was on the train and as this woman got off at a stop with her daughter, she came over and said, “I love your tattoo, my husband has vitiligo.”

LD: How has your life changed since you got the tattoo and your story went viral?

TPG: Well first, the tattoo has made me so much more comfortable in my own skin. People don’t have to assume things when they see my skin, and that’s made me feel so much better. I can honestly say that I’ve been able to accept my skin the way it is.

And second, I’ve met so many empowering people that will without a doubt be lifelong connections for me. I had never been part of the vitiligo community before this, but having this entire group of people embrace me has been life-changing. I was asked to come to World Vitiligo Day in Washington, D.C. this past June and I decided to go. It’s amazing to be surrounded by people who truly get you when you’ve felt so alone your whole life.

LD: Will you go to World Vitiligo Day next year?

TPG: Without a doubt. Detroit – I’ll be there.

LD: What’s your advice for other girls with vitiligo?

TPG: I don’t want to say anything cliché, but it is so cliché – my advice would be to love yourself and the skin you’re in. And don’t be afraid to show your skin to the world – not just for you, but for all girls with vitiligo. The more that we show people our skin, the more people will be aware of and understand the condition. How can we expect people to understand our condition when we hide it?