The first time I had a conversation with another girl with vitiligo, I bawled my eyes out. I was in my twenties and had been living with vitiligo for more than a decade. And while I knew other people had vitiligo, it wasn’t until I sat down to talk to this girl that I truly felt like I wasn’t alone. And that feeling – of knowing that I just might be normal – was so overwhelming and powerful, it changed my life.
In fact, it’s one of the reasons that Living Dappled exists today. As a team of women with vitiligo and mothers of those with vitiligo, we know what it’s like to feel alone. Vitiligo only affects 1% of the world’s population – which means it’s not that common. You aren’t going to run into many people with the disease, and it’s hard for those in your life to truly understand it. It’s easy for loneliness to creep in – for you to feel like you’re the only one going through this.
But you would be wrong. Our team knows this to be true, because we’ve found each other and countless other people in the vitiligo community to lean on. We’ve seen first-hand that telling our stories and hearing the experiences of other patients and parents can be transformative. We’ve cried, laughed and worried together, and we’ve witnessed this exchanging of stories changing our own lives.
Today, we pour that same energy and courage into Living Dappled every time we sit down at the keyboard. Turns out, it’s working. The number one comment we hear from readers is that they’re thankful for this blog because it helps them feel less alone.
And that’s exactly why we need to talk about vitiligo.
We need to talk about vitiligo – often
People need to feel like they belong. They need to feel wanted, desired and like are a part of a community. That’s where talking comes in. When you’re struggling to accept yourself and watching those around you struggle to do the same, talking to other people in your shoes can be life-affirming. It’s a reminder that you are normal, you belong and most importantly, you are not alone.
It might seem like a simple concept – but it’s a powerful one. That’s why I was overcome with tears the first time I talked to another girl with vitiligo. And that’s why I continue to watch other women do the same as they finally find the community they have been seeking. You might not even realize how much you need that affirmation – and yet once you have it, you can’t imagine living without it.
I know this well – and so do the women around me.
Continuing the conversation – with a new web series
Perhaps that’s why Tiffany Grant and I can’t stop gushing about life with vitiligo every time we’re together. Whether it’s on the phone, on long road trips together or just hanging out on the couch, we can’t help but dive into the everyday life with vitiligo – because it’s that healing.
Every time we leave each other, we feel reenergized – ready to face a life with vitiligo with renewed confidence and courage. And that’s the gift we want to give the vitiligo community.
That’s why we’re launching Let’s Chat, a weekly web series where we’ll bring you into some of our everyday conversations about life with vitiligo. The series will launch Wednesday, Oct. 17 on Living Dappled’s Facebook. We hope you join in and share in this experience with us.
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.