4 Reasons it’s Hard to Talk about Living with Vitiligo
It took me nearly six years to start this blog. Part of the delay was procrastination, plus I was busy with a new job and grad school. I like to think that I took my time with it solely in the pursuit of perfection. But when I look back, I think it was more than that. I’m not sure I would have admitted it to myself then, but I think part of me just wasn’t ready to talk about living with vitiligo.
There were the obvious reasons – wondering what people would think about me and not wanting to draw attention to my skin. But the more I thought about it, the more I realized I had a few big reasons of my own for not wanting to talk about my vitiligo.
1. I like to forget I have vitiligo.
Call it forgetting, pretending or whatever you’d like. I love to be blissfully unaware that I have a skin condition. And since I’m entirely covered in vitiligo, tanner makes it easy to do that. It’s like coming up to the surface for a fresh breath of air – you need and want the break from something hard. I love getting a spray tan, throwing on a swimsuit and heading to the beach for a day. I like bundling up in the winter in scarves and sweaters and putting my skin out of my mind because no one will see it anyway. Forgetting that you have vitiligo is easy, happy living. Talking about vitiligo means facing my past, present and future with vitiligo, and thinking about it daily – and that’s hard.
2. I wonder if I’m the right person to talk about living with vitiligo.
Why me? What makes me so qualified to talk about vitiligo? I have to think that there are so many beautiful girls out there living with dappled skin – girls with more confidence and bravado than me. Today, my vitiligo covers my entire body and I don’t leave the house without wearing tanner to cover my pale skin – yep, that’s me. If I can’t work up the courage to just be me, am I really strong enough to talk about this?
3. There are so many worse things than vitiligo.
This is one of the biggest challenges I’ve had when talking about vitiligo – there are so many worse things people must deal with. It’s not cancer. I’m not in a wheelchair. I’m not dying. I’m not living in severe poverty. I just have spots and pale skin. And when you look around the world and see the struggles that people are facing, it’s hard to get empathy for a non-life-threatening skin condition like mine. And why should I? All things considered, I am blessed to live the privileged life that I do. So why complain about the one thing not going my way?
4. It’s such a personal struggle.
Living with vitiligo is a personal, quiet battle that is largely invisible to the rest of the world. While I look in the mirror and think about my skin every morning, the rest of the world only sees me in passing. They might look at my skin, but they quickly move on to other things. My siblings even tend to forget I have vitiligo and are often surprised when people ask about it. But that’s understandable – the people in my life don’t see my personal struggle, because I haven’t let them. So why put a spotlight on it all of a sudden? It’s going to make me vulnerable, and I’m not sure I’m ready for that.
So why am I still here, writing about vitiligo?
It’s not because I’ve suddenly gotten over these reasons or found the courage to face them. It’s because learning to love your life, spots and all, is a journey – and I wish I’d had a blog like this one to read when I started my journey.
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.