What It’s Like to Live through Every Stage of Vitiligo

I’ve been living with vitiligo for twenty years – that’s right, two decades. The first tiny spots appeared when I was seven years old and since then, have slowly spread across my body. Today, I have universal vitiligo – I’m covered head-to-toe, my skin completely transformed by vitiligo.

Looking back, I’ve come to realize that my experience gives me a unique perspective. Having been through each phase vitiligo myself, I can relate in a real way to just about any girl with vitiligo – because I’ve been there.

Here’s what it was like to live through each stage, and where I am today:

Getting my first spots

I had always thought that my first spots appeared on my knees – because that’s the first time I ever saw them. But my mom will tell you that they first appeared along my spine. Perhaps I didn’t understand the spots as a kid, but I don’t remember them bothering me. I had gorgeous, tan skin growing up, and while the contrast in color made the spots obvious in the summer, it wasn’t enough to break my confidence.

Living with vitiligo as it spreads

It took a very long, fifteen years for the spots to spread across my body. At times, I was confident and happy. I would wear dresses and shorts without a second thought in the summer. But I also remember crying myself to sleep at night. As a way of coping, I would obsess over the day my vitiligo might go away. Going into high school, I actually believed that no one would want to be friends with me because of my skin. By the time I graduated, I had realized that it was my own self-doubt holding me back and went off to college with a new-found confidence. From start to finish, these years were a fast and furious roller coaster of emotions.

Being completely spotted

For me, being completely spotted was by far the worst stage of living with vitiligo. I think of this as my ‘Dalmatian phase.’ Instead of having tan skin with spots, I had finally reached the point where I was evenly spotted across my entire body. With no patches of skin that were a singular color, it was glaringly obvious that I had a skin condition. My confidence plummeted, I stopped wearing bathing suits and I struggled to even put on shorts. People stared at me relentlessly and I would catch wandering eyes everywhere I went. I started to love the fall and winter, when I could hide beneath sweaters and scarves and my skin could go unnoticed. It was hard for me to feel beautiful and I wished more than anything that my vitiligo would just disappear.

Transitioning to universal vitiligo

As my skin became completely covered in vitiligo, I started to wear tanner so I wouldn’t look as pale. And once I was completely covered, wearing tanner almost hid the fact that I even have vitiligo. For the first time that I could remember, I had a “hall pass” to be a normal girl – free from staring, judging and curious eyes. I actually liked the girl in the mirror when I wore tanner. Guys thought I was beautiful instead of weird, and I loved the attention and newfound confidence, even if it was superficial.

Today, I still have universal vitiligo and am still working on loving my skin the way it is. For me, it’s a road with no end – a journey 20 years in the making and yet not even close to being complete.