ORANDO, Fla. – Ash Soto says she has the world painted on her body, but she wasn’t always so confident in showing it.
The 25-year-old lives with vitiligo, a skin condition in which one’s skin cells stop functioning, causing the person to lose pigmentation. Those with vitiligo are often seen with white blotches or patches of skin that appear with patches of their original skin tone.
“I was first diagnosed at 12 years old and it started with the tiniest spot on my neck and within a couple months, it expanded, growing to other parts of my body," Soto explained.
Vitiligo is a long-term condition. There’s no way of predicting how much skin will be affected or a proven way to stop it, according to dermatologists. Soto said at first it was tough to hear that she couldn’t make the growth stop but the hardest part was dealing with her confidence at such a young age.
“I wasn’t born with it, so I had to grow into it especially at such a prime age going into middle school where kids aren’t always the nicest,” she said. “I can honestly say vitiligo has been one of the most difficult things I’ve dealt with in my life because not only is it a physical condition but a mental condition."
The National Library of Medicine reports about 1% of the population is diagnosed with vitiligo. Doctors point out though that people of color and those with more melanin may suffer more mental distress as vitiligo is more noticeable.
Soto, a native of Puerto Rico, has called Orlando home for nearly a decade. She said she’s dealt with lifestyle changes before but it was in her teenage years where she said she had to come to terms that she couldn’t control certain aspects of her life. From vitiligo to other people’s reaction to it, to even bullying -- Soto said her journey to self-confidence was a bumpy one.
“I can’t even count how many times I’ve been called cow,” she said. “People would act like if I was contagious and that was heartbreaking for me. It made me become a shell of the little girl."
The self-proclaimed vitiligo influencer said she used to hide behind sweaters and jackets to cover up her skin, calling them security blankets.
“I just felt so disgusted with myself it was a dark time for me. I thought I’d never really see the light until I realized I didn’t want to be unhappy anymore or miserable. We live one life and I knew the only person that could coach myself was me,” she said.
Soto said she built her confidence up in steps, starting with wearing certain garments of clothing to practicing being more comfortable going out in public spaces. She also turned to journaling to find peace with her emotions.
“I started challenging myself little by little whether it was going out with shorts, which seems so minimal for other people but for me was a nightmare, but I did it and practiced journaling and focusing on the positive and not being so hard on myself,” she said.
As she grew more comfortable being in her own skin, she decided to use her newfound confidence in a creative way. She said everyone’s body is a work of art, but for her vitiligo is part of it.
“Art was a great escape and a way to empower myself mixing my vitiligo with art and making it into a masterpiece. (It) would empower me overtime and I’d get stronger and stronger. My vitiligo no longer controls the way that I live my life,” she said.
As Soto grew comfortable in her own skin, she harnessed the power of social media and art to spread her message of awareness and self-love. Her story has since been featured in Latina and Allure magazines and featured in a BBC documentary addressing the skin the disease. She was even featured on a billboard in Los Angeles as part of a clothing brand ad to promote inclusivity.
“I never had that person to look up to when I was diagnosed. No one I can truly say knew exactly what I was dealing with not only physically but emotionally," she said. "I wanted to be that figure for younger people not only with vitiligo but with any self-confidence issues. I knew that sharing my story would not only help others not feel alone but empower them to do the same at their own pace.”
Soto said she is humbled others have found the beauty of her body that she struggled to find herself. She said she owes this small-found fame to her Instagram.
“That’s where I first revealed my vitiligo to the world so it holds a special place in my heart and the platform I use the most to share my struggles and story,” she said.
When users visit her profile, they’ll find photos of Soto using her vitiligo to create artistic images on her body. She posts captions calling for harmony and kindness, asking people to love the skin they’re in and to remember there’s beauty wherever one looks.
Soto said her messages go beyond vitiligo. As a Latina, she said women could struggle with body image including growing accustom to one’s curves and hips. Her hope is to make an impact by promoting positive body image overall.
“You have to fight every day to never let the stares or opinions of others control how you view yourself or how you live your life. You have to embrace those big hips, vitiligo, or whatever the case may be because your skin tells a story. Those stretch marks you hate so much represent the strong woman you are," she said.
“That’s why I’m so proud to be Puerto Rican because we’re all different, shapes, sizes but most of all color but we all stand together with so much diversity as one.”
Those who wish to follow Soto’s journey can check out her Instagram at @radiantbambi.