There’s something about talking to someone who shares your problem that has an intense healing effect – it makes you feel like you aren’t crazy. And it’s that feeling of being not-so-alone that makes talking to others with vitiligo the best form of vitiligo support.
I didn’t speak to anyone with vitiligo until I was 26. 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. And I never really had the chance. Despite 2-5 million people in the U.S. having vitiligo, I’ve only seen a handful of people with the condition throughout my life.
Then this past February, as I was researching vitiligo blogs, something made me want to meet Sandra Reese, a lifestyle blogger with vitiligo, when I came across her profile on More Than My Skin. Reading about her experience with vitiligo, I was struck by how much we had in common. I wrote down “meet her!” in my notebook and we ended up connecting just a few weeks later.
“Healing” is the word I would use to describe our first conversation. Talking to someone else with vitiligo made me feel normal. For the first time in my life, I felt like someone got it – like they understood my pain and what I was going through.
We talked about how it feels like no one gets it
We both agreed that some days, living with vitiligo is just emotionally painful. And when you’re hurting, it’s easy to feel to like no one gets it. Your mom or your friend might comfort you while you’re upset, but then they walk away free and you still have to live with it. They can’t understand the ultimate reality of living with spots every day.
We vented over tanning and how much effort it takes
We both wear tanner to help mask our vitiligo. Using tanner is a confidence-builder, but it can take time to put it on and keep your skin moisturized. If you get a spray tan, that takes even more time. So we laughed over how much time we devote to tanning and lamented over how easy life would be if we didn’t use tanner.
We bonded over our fear of pool chlorine stripping away our tanner
While wearing tanner helps us camouflage our skin color, chlorine strips the color pretty quickly – which means no swimming in the pool for us. It’s frustrating to sit out and watch everyone else swim, but it’s also frustrating to have your skin change colors in a matter of minutes. We considered how it feels like we’re being weak or lacking confidence by sitting on the sidelines. But we also recognized that we should be proud of ourselves for even putting on swimsuits – we’ve both been at the point where we wore pants in summer heat just so people wouldn’t stare at us, so this is a big step forward.
We talked about dating and relationships
We’re both in long-term relationships, so we talked about how our skin first came up in conversation, how nervous we were to talk about it and how we’ve slowly come to realize that we care about our skin more than our boyfriends do. In fact, our boyfriends have never really cared about the way our skin looks. They do care about how much it affects us though. They want us to see ourselves the way they see us – something that can hard for us to wrap our heads around.
We talked about vitiligo support and how to be more confident
Sandra realized a while ago that opening up and talking about her skin would help her grow. I just started catching on to that idea within the past year. There are blogs, support groups and others with vitiligo out there that can help you. And the more you talk about it and own it, the more confident you become in who you are.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.