Instagram Model Turns Her Vitiligo Into Body Art

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With over 155k followers, Ash Soto has taken her vitiligo and turned her body into a work of art. After her diagnosis, Ash struggled to come to terms with her new body, and ended up finding her voice and challenging beauty norms through painting. 

When did your journey with vitiligo start?

I was diagnosed with vitiligo when I was 12 years old. Vitiligo is a rare skin condition in which the pigment cells of the skin, melanocytes, are destroyed in certain areas. I was in middle school at the time when I found a tiny spot on my neck, which I didn’t think much of for a while. I used to spend a lot of time outdoors so I figured that it was just a regular sun spot. A few months later, though, I remember coming out of the shower and seeing a new spot next to the old one. At that point, I knew something was up and decided to tell my mom who booked an appointment with a dermatologist.

Within moments of seeing my spots, my dermatologist immediately diagnosed with with vitiligo. I had never seen anyone with vitiligo in person before. The only person I knew had “something” was Michael Jackson. But I didn’t even really know what his condition really was. I thought it would be fixed and that I’d be OK.

I remember my mom getting really emotional. She did know what it was; she knew how severe it could get and that there was no cure. Her reaction scared me. The dermatologist prescribed me a cream and told me that the cream would prevent the vitiligo from spreading. I had no idea how much worse my spots were going to get and how much my life was about to change.

How did your diagnosis change your life?

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I started getting spots all over my body in a short period of time. The cream didn’t work. I wasn’t born with vitiligo, so seeing myself change so quickly was a really scary experience. I remember going to school and being made fun of. Kids would say mean things because they didn’t understand what was going on with my skin. Truthfully, I didn’t really know what was going on either. All I wanted to do was hide.

Vitiligo discolors your hair in addition to your skin. So parts of my hair turned white. Sp that was an added thing that kids would make fun of me for. “Why are you so old? Why do you have grey hair?” I didn’t have a response because I didn’t know what was happening myself.

I would go into the shower and try to scrub the discoloration away. I didn’t want to be in the skin I was in. Why me? I thought.

I stopped doing all the things that I loved. I stopped socializing with my friends. I stopped cheerleading. I hated school because it was hell to me. I remember purposefully missing the bus to school so that I wouldn't have to go. Just going outside gave me anxiety. I always felt judged.

When I was 16 years old, I remember looking at magazines and seeing women with beautifully tanned skin and wanting to look like that. I begged my mom to take me to get a spray tan to cover my spots. She wasn’t happy about it, but she took me anyway because she knew how badly I wanted the tan. I remember getting the spray tan, and then looking like a straight up carrot afterwards. I also remember never having felt so beautiful.

The next day we went to the beach with my family and I felt so confident. But once we went in the water, my spray tan came off and I felt so humiliated that I never went to the beach again (until recently!).

What was the turning point in your journey with self-confidence?

There came a point where I just didn’t want to be sad anymore. I knew I couldn’t be in hiding any longer. I knew that the only person who could help me feel comfortable with myself was me. From that moment on, I started doing little things every day to help build up my confidence. Confidence isn’t built in a blink of an eye. It takes time, and everyone has their own pace. I started challenging myself to go outside and wear shorts, or to wear a tank top. I would write affirmations like “I am beautiful” and “I am enough” on a little board in my room. I knew that I had to be 100% OK with myself in order to feel comfortable helping others.

I remember sitting down with my mom and telling her that I want to be the role model that I never had. I decided to post about my journey with vitiligo on my Instagram and relieve myself of this secret that I was hiding from the world. That initial post was my breakthrough.

 Ash's first post on vitiligo

Ash's first post on vitiligo

When I joined Instagram, only my close friends knew I had Vertigo. I used to put makeup all over my face and down my neck, and cover my body in clothes. I only took photos of my face so none of my followers knew about my skin condition.

It was so hard to press post. When I did, though, I felt this huge sense of relief that I could finally be ME! It was a very exhilarating feeling and even thinking about that moment today makes me emotional. That moment was life changing for me.

After that, I made an effort to start posting words of encouragement on my Instagram. I’ve tried to share my journey on social so that people with a variety of different insecurities can relate to me. In addition to becoming more of a role model for others, my Instagram is also a form of therapy for me because I’m still a work in progress myself. I don’t care about the likes or the comments --- if I can just reach one person with my post, I’m happy.

When did you start getting creative with your body?

My family has always been really been into art, so art has always been a big part of my life.

One day when I was paining I got a little bit of paint on my skin by accident. I then started to trace my spots with my paintbrush. I liked the way it looked so I continued tracing every spot on my body that I could reach. I looked in the mirror and fell in love with what I saw: hope.

Art is undeniably beautiful. But maybe people don’t perceive vitiligo as beautiful? When you mix art with something that people perceive as a flaw, something explosive happens. You can show someone the beauty in a flaw.

I knew I wanted to take my body art to the next level so I’ve continued mixing actual art and painting my vitiligo at the same time. I want to show people that it’s not only OK to be unique, but that it’s a positive thing to be different. I’ve created all sorts pieces and shared them on social --- I’ve done the world map, recreations of classical paintings and all sorts of cartoons.

Every time I do a painting, it reminds me of how beautiful my vitiligo really is.

What advice do you have for your younger self?

If I could talk to my younger self, I would tell myself that everything is going to be OK, and that you are not going to be in this dark space forever. You are going to be happy.

I’d then give myself a hug and tell her that I will one day end up inspiring so many people.

Looking forward, how do you want to use your platform?

I want to continue to do art and to help people feel more confident.

I want to start vitiligo meet-ups where I can paint people who have Vitiligo to help people feel comfortable in their own skin. It’s something I’ve thought about doing for a long time.

I’ve also started a Youtube channel. My goal is to try and reach out to more followers with my actual voice. I think that hearing my voice could help me connect to people on a deeper level.  

I’ll do whatever it takes to keep the awareness going and to be that voice for people going through any skin issue --- whether it’s vitiligo, eczema, or psoriasis! Nothing makes me more happy than that.

InterviewsKatia AmeriComment