By Erika Page, as told to Hallie Levine
I’ve been living with vitiligo since I was 7 years old. It started as small spots on the back of my spine but quickly spread, first to my knees and elbows, then all over my body. By the time I reached my early 20s, I’d lost all of my skin pigment. I put on a brave face because I didn’t want anyone to know how much I was hurting, but I had moments where I’d lie in a crumpled heap, crying on the floor. The worst part was the feeling 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 disease. But you’re not. There’s a whole village of us out there. Thanks to the internet, there are a number of ways to find your vitiligo tribe, too. 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.
The Power of Connection
I’ll never forget the first time I connected with another person with vitiligo. I was 26. Up until then it had never occurred to me to try to speak to someone with my condition — it seemed so personal and it wasn’t something that I wanted to share. Then one day, I stumbled upon a vitiligo blog that really resonated with 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 more than 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 talked about how it feels like no one gets it. Sure, a family member or friend might comfort you while you’re upset, but they can’t understand the ultimate reality of living with spots every day. When I hung up the phone, I cried, but I also felt a sense of peace: I had realized how much power there was in not feeling alone.
I decided then and there to launch a website. I’d been surprised at the lack of resources for people living with vitiligo. I also had loved to write since childhood. Why not combine my two passions to create a positive, uplifting platform? I wanted to capture the little moments of living with vitiligo: what’s it like to be stared at in the grocery store or to shake hands with someone when you first walk into a meeting. More importantly, I wanted to create a space where people could talk about how to live with vitiligo — especially in a positive, inspiring way.
Gaining Strength Through Social Media
When I was first diagnosed, there were no Instagram accounts I could turn to for inspiration or advice. Today, however, anyone who’s newly diagnosed can easily get
onto social media and follow other people who look just like them. That’s a beautiful gift. It’s very empowering to not only have your Instagram feed filled with these folks, but to realize that the condition doesn’t take over their entire lives. You learn that while you’re a person who has vitiligo, it doesn’t define who you are. It’s a small but fundamental shift when it comes to learning how to live with vitiligo.
It also inspires in other ways, too. A few years ago, another woman with vitiligo on Instagram dared me to take off my tanner, which I had been wearing head to toe for a few years to cover my vitiligo. The idea made me sick to my stomach at first. But the idea had been planted. A year later, I had the courage to dart into the grocery store without tanner for 5 minutes. At first, I felt exposed, but once I got back into the car, I felt calm and confident. I had been seen by people without tanner and makeup — quite literally my worst fear — and nothing had happened.
How to Find Your Tribe
There are so many ways to reach out and get a virtual or in-person connection. The first are social media networks, such as a Facebook group or an Instagram account. These are safe spaces where you can get ideas, share thoughts, and get social support. (You can find a list of Instagram accounts to follow here.) There are also membership networks like the Dappled Darlings Community, which provides members with a private Facebook group, monthly virtual discussions, live community interviews and curated vitiligo news.
In-person support can also be important. Groups like the Global Vitiligo Foundation can point you to local events near you. There’s also the annual World Vitiligo Day conference, with allows you to connect with both medical experts and other patients.
One way I’ve personally connected with other women with vitiligo is through Living Dappled’s photo shoots. It’s been amazing to watch people’s confidence grow throughout the day as we photograph them. I remember once as we sat down for lunch, one of the women confided that she’d never worn a dress that showed off her legs before. She’d felt empowered to that day, 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 even knowing each other’s name. We get each other the way partners, or parents, or children can’t. Just the act of opening up and talking about your skin helps you grow. The more you talk about it and own it, the more confident you become in who you are.
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