By Erika Page, as told by Hallie Levine
I’ve been living with Vitiligo since I was 7 years old. It started with small patches on the back of my spine but quickly spread, first to my knees and elbows, then to my whole body. By the time I was in my early 20s, I had lost all of my skin pigment. I put on a brave face because I didn’t want anyone to see how hurt I was, but I did have moments where I was curled up on the floor and crying. The worst was the sense of lack of control.
When you have vitiligo, it’s easy to feel like you’re the only person in the world living with the condition. But you are not. There’s a whole village of us out there. Thanks to the internet, there are also a number of ways to find your vitiligo strain. Whether it’s through social media platforms like Facebook or Instagram, personal blogs, or even through my own website, Living Dappled, there are ways to connect with others and feel less alone.
I will never forget the first time I bonded with another person with Vitiligo. I was 26. Up until then, it had never occurred to me to talk to anyone with my condition – it seemed so personal and it wasn’t something I wanted to share. Then one day I stumbled across a vitiligo blog that really spoke to me. The woman was about my age and lived in New York City. I messaged her on LinkedIn and we ended up talking on the phone for over an hour.
Talking to someone else with vitiligo made me feel normal. She knew my story before I even had a chance to tell her. She understood my pain and what I was going through. We’ve been talking about how it feels like nobody understands. Sure, a family member or friend could comfort you while you’re upset, but they fail to understand the ultimate reality of living with pimples on a daily basis. I cried when I hung up, but I also felt a sense of peace: I had realized the power of not feeling alone.
I decided then and there to start a website. I was surprised at the lack of resources for people living with Vitiligo. I have also loved to write since I was a child. Why not combine my two passions to create a positive, uplifting platform? I wanted to capture the little moments of living with vitiligo: what it’s like to be stared at at the grocery store or to shake someone’s hand when you first walk into a meeting. More importantly, I wanted to create a space for people to talk about living with vitiligo — most importantly, in a positive, inspirational way.
When I was first diagnosed there were no Instagram accounts to turn to for inspiration or advice. Today, however, anyone newly diagnosed can easily get it
on social media and follow other people who look just like her. That’s a nice gift. It’s very encouraging not only to fill your Instagram feed with these folks, but also to realize that the disease doesn’t take over her entire life. You learn that although you are a person who has vitiligo, it does not define who you are. It’s a small but fundamental shift when it comes to learning how to live with Vitiligo.
It inspires in other ways too. A few years ago, another woman with vitiligo challenged me on Instagram to take off my self-tanner, which I had been wearing from head to toe for a number of years to cover my vitiligo. The idea made me nauseous at first. But the idea had been planted. A year later I had the courage to dash to the grocery store for 5 minutes without a tanner. At first I felt exposed, but once I got back in the car I felt calm and confident. I had been seen by people without tan and makeup – literally my worst fear – and nothing had happened.
There are so many ways to get in touch and create a virtual or in-person connection. The first are social networks such as a Facebook group or an Instagram account. These are safe places to brainstorm ideas, share thoughts, and get social support. (Here’s a list of Instagram accounts to follow.) There are also membership networks like the Dappled Darlings Community, which offers members a private Facebook group, monthly virtual discussions, live community interviews, and curated vitiligo news .
Personal support can also be important. Groups like the Global Vitiligo Foundation can direct you to local events in your area. There is also the annual World Vitiligo Day conference where you can connect with medical experts as well as fellow patients.
One way I’ve personally connected with other women with Vitiligo is through Living Dapple’s photo shoots. It was amazing to see how people’s confidence grows throughout the day as we photograph them. I remember once, as we sat down to lunch, one of the women confided that she had never worn a dress that showed her legs before. Up until this day, she had felt empowered as part of a larger community.
That’s the thing about vitiligo: you can see someone else with it and form a strong connection without knowing the other person’s name. We understand each other in a way that partners, parents or children cannot. Just the act of opening up and talking about your skin will help you grow. The more you talk about it and acknowledge it, the more confident you become in who you are.