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Why You Should Share Your Story When You Live with Vitiligo

Why You Should Share Your Story When You Live with Vitiligo

Anonymous
Woman with vitiligo stands with arms raised above and smiling.

Living with vitiligo is a surreal experience. It’s hard to imagine that you might lose your skin color one spot at a time—and it’s even harder to imagine what that experience is like and how it could impact every single part of your life. And yet, it does happen to some of us, and it does change our lives.

For many, hiding the fact that you’re losing pigment is a natural first reaction to the condition. It’s such a personal experience and can feel embarrassing and shameful to be “different.” Revealing your vitiligo can put you in a place of vulnerability. It’s easier to keep it a secret.

I didn’t have the chance to keep my vitiligo a secret. After getting vitiligo at the age of seven, the white spots spread so rapidly and aggressively that I couldn’t hide the fact that my skin was different. Yet, for most of my life, I didn’t talk about my skin—I just kept quiet and did my best to navigate social situations and my emotions.

That all changed when I launched Living Dappled. For the first time, I was sharing my story in blog posts, with other women and at events as a speaker. The first time I shared my story, I felt completely exposed and uncomfortable. But as the reactions of my own family and friends, and now strangers from around the world, started pouring in, I was amazed at the positive ripple effects it had—both in my own life and in the lives of others.

Whether you’re sharing your story with friends and family, a stranger on the street or your social feed—your story matters. Your story matters because it can not only help you heal and find yourself again, but it can help others and the vitiligo community as a whole. Here’s how.

Sharing your story can help you heal

For years, I thought that if I could ignore my vitiligo and pretend it wasn’t there, I would be happy. Denial was my survival tactic. I would avoid mirrors, cover my skin and stay away from beaches and pools—anything to put distance between me and the reminder that my skin was spotted. Can you guess the ending to this story? It didn’t work. And every reminder caused a mental and emotional spiral.

Then I started writing about vitiligo. For the first six months, I would wake up in the morning to write stories about my life with this condition. As my fingers would fly over the keyboard, tears would stream down my face. The stories I was putting to paper were hard truths about my skin that I had yet to face. Giving those feelings a voice became a form of therapy. 

Today, it’s easy for me to talk about my experience with vitiligo. Yes, I still get choked up at times. There will always be strong emotions tied to my life with this condition. But telling my story has brought me healing and peace.

Sharing your story can build your confidence

Can sharing what might be the most vulnerable part of your life help you feel more confident? It sounds counterintuitive, but it turns out that the answer just might be yes.

Many people have a fear of sharing their vitiligo because the reactions of their family and friends are unknown. Naturally, you fear the worst. Perhaps you don’t like your skin and you’re worried that others will think the same. If that’s you, you aren’t alone. Yet, many find that sharing their story brings a flood of positive support from their social circles and beyond. Knowing that people accept you for who you are provides security—and a confidence boost.

Sharing your story can help others

The first time I spoke to another girl with vitiligo, I hung up the phone and cried. They weren’t necessarily tears of joy, but they were certainly tears of relief. For the first time in my life, I felt like I wasn’t alone—and the feeling was overwhelming.

Since I’ve started sharing my story through Living Dappled, I’ve been contacted by countless others with vitiligo who said they read every single blog post on the site or cried reading my story—because they could relate to every word. In turn, these stories inspired others to show their friends and family their skin for the first time, giving them the chance to experience this freedom for themselves.

Sharing your story builds awareness

Only 1% of the world lives with vitiligo. It’s a rare disease that most people aren’t familiar with. But that’s beginning to change. Over the past decade, vitiligo awareness has spread because men and women with this condition have spoken up and shared their story through social media, media interviews, modeling placements and more.

By sharing your story, you’re helping to raise awareness about this condition and what it’s like to live with it. Why does this matter? On a global scale, awareness helps build the case for research, treatments and other forms of support for those with the condition. Day to day, awareness builds understanding through education. The more people that know about vitiligo, the more normal it becomes and the less likely those with vitiligo are to experience stares, bullying or inappropriate comments.

So the question is: will you tell your story?

Have you told your story before? Share your experience below.

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