Why Community Matters When You Live with Vitiligo

I got vitiligo when I was just seven years old. At first, the white spots on my knees and spine didn’t bother me. That all changed when I entered high school. Despite struggling significantly with low self-esteem and anxiety, I kept my turbulent emotions to myself. In fact, it wasn’t until I was in my mid-twenties that I reached out to another person with vitiligo. That conversation changed my life.

For years, I had felt alone and misunderstood. Talking to another person with vitiligo not only changed that but gave me a confidence I had never had before. And I know I’m not alone in experiencing the power of connection.

Since that call, I’ve met countless other people with vitiligo – and I hear and see the same story over and over again. The power of community – of knowing you are not alone – is transformational. I’ve seen a mom with vitiligo wear a dress that revealed her spots for the first time – because of community. I’ve seen a beautiful model who have never shown her vitiligo before post pictures of her skin – because of community. And I’ve seen countless people share their stories for the first time – because of community.  

Community can be life-changing when you live with vitiligo. Here are just a few of the reasons why.

You can stop feeling “alone”

Only 1% of the world has vitiligo – that is 1 in every 100 people. The reality of that statistic is that many living with vitiligo do not know anyone else who has the condition. In fact, depending on the size of the city you live in, you may grow up not even seeing another person with vitiligo. I grew up in a small town in Maryland and can count on one hand the number of times I remember seeing another person with the condition. The experience can be a lonely one. Yet, it doesn’t have to be.

The other reality is that 1% of the world is 78 million people – and that’s not a small number. In other words, you are not alone and you do not have to be. Connecting with a vitiligo community can give you a place where you are not “different” but part of a team that can relate to your story.

You can connect with people who “get it”

It’s hard to imagine exactly what it’s like to lose your pigment. In fact, many people today don’t know that you can lose your pigment – it’s often something that is taken for granted. And while families and friends may support you and be there for you, it’s often hard for others to relate to the experience. That’s where community comes in.

In talking with others with vitiligo, I feel understood in a way that I haven’t been with family and friends. There’s something magical about having someone “know” your story before you even tell them. Shared experiences can create intimate bonds and relationships that are fundamental to helping you find acceptance in living with vitiligo.

You can share your story

Your story – and the way you tell it – has power. For many, sharing their story publicly or with close family and friends has brought healing and peace. When I first started writing about vitiligo, tears would stream down my cheeks as my fingers flew across the keyboard. It was the first time I was putting my story into words – and the truth about my experience hurt. Over time though, that experience changed.

Sharing your story can give you an outlet to start accepting your journey with vitiligo. Vitiligo communities provide a safe, supportive space to do just that. You’ll have a space to talk openly about your experience amongst others who understand exactly what it’s like to live through it.

You can crowdsource information

Despite a surge of information about vitiligo in the past two decades, the reality is that there is no one-size-fits all guide to living with vitiligo. There are also still a lot of unknowns about vitiligo and research about treatments, nutrition and mental health related to vitiligo are all still underway. That’s why having a community of people who have lived this experience can be an invaluable resource.

Vitiligo communities are all about people coming together to share experiences and resources. You can ask questions, get word of mouth recommendations, seek advice and learn from others who have gone through this experience before you. By accessing a vitiligo community, you’re accessing shared knowledge and support from others just like you.

You can change your life

Let’s say it again for the people in the back: having a community can absolutely change your life. For all these reasons, having a community you can turn to and lean on when you live with vitiligo can transform the way you live your life. I’ve seen this first-hand in my own life and the lives of others – and I believe that the same can be true for you.

There are more vitiligo communities today than ever before. Check out our guide to vitiligo communities and learn more about Living Dappled’s own community, a membership network for those with vitiligo.