Why It’s Okay to Struggle with Vitiligo
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.
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.
Great article today!
Dear Erica, thank for writing from the perspective of the sufferer. This is one of the best pieces I have read in along time, having been following many comments on many sites from around the world. I think it is healthy to acknowledge our social and psychological suffering and effect on our sense of self. I too, have Vitiligo and have never embraced it, having had it since I was 6 years old and living in a small country town in the 1950’s. There was no understanding whatsoever of what it was or how I felt and it was referred to as my “stains”. I felt like it was a mark of shame and when I was diagnosed at the age of 14 I felt like my life was over. I have hidden it until now and it has had have a major effect on how I lived my life and the relationship choices I made. Still, now that I am a mature woman I have gained an inner confidence that extends to more than just acceptance of my Vitiligo (which is actually not as bad as I made it out to myself). I am happy for the young people today who are open about having it and who are even seeing themselves as uniquely beautiful. I would have liked to have had some degree of self acceptance and courage of this type earlier in my life. I live in Australia and am a member of the Vitiligo Association of Australia, which is run by Dermatologists, and will be attending the Annual Scientific Conference of Dermatologists in May this year. Maybe I will come to Huston for World Vitiligo Day. The focus on mental health is so crucial as the suffering is deep, perhaps deeper than many care to admit.
Nadine, thank you for the kind words and for sharing your story! I do think it’s important to recognize that people suffer – it’s just as much a reality as those who have confidence. Finding that confidence is certainly a journey that I think most of us are still on. I hope to see you at World Vitiligo Day in Houston should you attend!
Nice article! Vitiligo is really the toughest thing to handle. None of the treatments had cured vitiligo. Now, I am using vitiligo camouflage makeup to cover my vitiligo.