Ten years ago, it would be hard to imagine a world where a Victoria’s Secret or GAP Kids model had vitiligo. Today, it’s a different story – and that’s good news. However, not everyone is celebrating their skin. And that’s okay too.
It’s important to recognize that many people today still struggle with vitiligo. They aren’t the people you see in magazines and advertising. They aren’t the people you see posting pictures on Instagram with #vitiligobeauty. They’re the people sobbing in doctor’s offices, asking for a cure. They’re the people hiding their spots under makeup and clothing, anxious to leave the house. And their story is equally as deserving of recognition.
Perhaps it’s surprising that we should have to say it’s okay to struggle with vitiligo. Yet today’s pro-acceptance culture in the vitiligo community sometimes sends the message that struggling is to be frowned upon. In fact, some don’t want to be associated with messages that even hint at struggling. Because how could you not love your spotted skin?
Yet the rarely shared reality is that vitiligo is often a devastating, life-changing disease that turns your world upside down. As someone who has lived with vitiligo for more than twenty years, I know a thing or two about the harder parts of a life with spots. And I can tell you wholeheartedly: it’s okay to struggle. Here’s why.
Vitiligo is an unexpected, surprising diagnosis
Let’s start with the fact that vitiligo is still widely considered to be a rare disease, affecting only 1% of the world’s population. In fact, many people today still haven’t heard of vitiligo or know what it is. You only have a 1 in 100 chance of getting it. So to find yourself sitting in a dermatology office, being told that your immune system is attacking your skin cells and that you might start losing your skin color is, quite frankly, shocking. Especially if that is the first time that you have ever heard of vitiligo.
Vitiligo introduces the unknown
Most people struggle with change – we can’t help it. Naturally, we are creatures of habit and we like the expected. When you think about your future, there are always unknowns, but not the drastic types of unknowns that come with vitiligo. For more than twenty years, I watched my spots spread and change every single day, never entirely sure what tomorrow would bring. Would I always have vitiligo? Would it take over my skin? Will I be able to make friends? Will I always feel like an outsider? Your skin is a major part of who you are. To have that what was once a constant suddenly become unknown can be unnerving.
Vitiligo changes many facets of life
Vitiligo doesn’t just change your skin color – it can change the way you live your life. For many years, vitiligo was my first thought in the morning and my last thought before falling asleep. It influenced the way I did my makeup and the clothes I chose to wear. It changed the way I interacted with new people and it made me nervous to be in public. And I know I’m not alone. Vitiligo can become the lens through which you see the world – and change the way you live your life. It’s influence can creep into the smallest moments of your day in ways that you wouldn’t have thought possible.
Vitiligo challenges your sense of self
When you have vitiligo, it’s not just your skin color you’re losing – it’s your sense of self. Every day, when you look in the mirror, your image is changing. It’s surprising how much the way you look defines your sense of self – and others’ sense of who you are too. The moment that starts getting stripped away, you’re forced to change your understanding of self – again, and again, as your skin continues to change. For what might be the first time, you are forced to reconsider who you truly are and look inside for answers that were previously staring back at you in the mirror.
Photo by Rachael Laurin Photography
Erika Page is a writer and blogger with universal vitiligo. Her first spots appeared on her spine when she was seven years old and today vitiligo covers her entire body. Based just south of Washington, D.C., Erika founded Living Dappled to create a community of inspiration and hope for girls and women living with vitiligo.