Ariana: Living Beautifully with Butterfly Skin

Ariana is a body positive advocate and model who lives in Califorinia. She has a rare skin condition called epidermolysis bullosa that affects her daily, but it hardly keeps her from embracing life.

“I have a rare condition called epidermolysis bullosa or butterfly skin. Not a lot of people know about it. My skin is really fragile because I’m missing the protein that holds my skin together. For me, even things like eating, certain environments, and walking can tear my skin.”

“Growing up, I didn’t see people like me. So, I wanted to be the person who I didn’t grow up seeing. I just wanted to help break the stigma on physical appearance and to help people be who they are. However, there are still days where I don’t feel good about myself, my appearance, or who I am as a person. In Mexican culture though, self-confidence and self-esteem issues aren’t really talked about. You keep it to yourself. I did have a few friends at school who I could talk to, but they didn’t really understand. I spoke to them more about school, music, and pop culture. We never really had deep conversations or felt comforable enough around each other to do that. When I was a kid, it used to be very difficult. In middle school and high school, I thought that I could never feel confident like the other girls, but raising awareness about my skin condition has really changed me. And although I’ve gotten amazing feedback on social media, I still wondered why people never say these things to me in person. It’s very uplifting and empowering to be my true self on Instagram and to receive positive feedback, but receiving positive validation on a platform is much different than receiving it in person.”

“Not being told these things in person made me realize how I shouldn’t rely on the positive comments that I get from a platform. I should understand that I’m worthy on my own.”

“I grew up by without many friends, and I didn’t have siblings at that time so that definitely affected my social skills and my social life. And then, I was always at the hospital so it was hard to put or get myself out there because my condition didn’t really allow that. I always wanted to talk to people and socialize. My social skills were always there, and I always wanted to enhance them, but it’s just that people wouldn’t talk to me. So, it was hard to actually get the opportunity to actually sit down and talk to someone.”

“In college, I got more opportunities and experience to do this. When I first got to college, I was really nervous because there were so many new people. I thought that meant more questions and even more stares. But after my first semester, I realized that wasn’t even true. Some people have kids or are married. They’re running around, and everyone is in their own little world. That really helped me embrace myself because there wasn’t that social pressure of wondering what people are saying and thinking. Before, I came from an environment where it was the same people who were always staring.”

“But in college, it’s different for me. Now, I’ve even been in a sorority for 2 years. It’s been fun. Before COVID, I would go out with them, and we would have events, and that has really helped me out a lot. I have never been supported by so many women or had people who I could actually go to as my friends and share common goals with. In college, I began to go out more despite my condition. Even though it causes damage, I decided to do the things I like. Otherwise, I’d just be in bed doing nothing, but I could even get hurt then. So, I might as well go to concerts, go to college, hang with friends, and go to the movies. I always think to myself - “I might as well go out and make a life for myself.”

“When I went to college, it was like getting a new life that I didn’t have before. I was able to meet individuals that really didn’t care about my appearance but rather my personality and hanging out with me. In college, I was able to focus on who I was and the things that I like to do. Before, a lot of my attention was focused on explaining myself to people.”

“My condition is very visible so even if I don’t care to talk about it, people force me to talk about it because they’re always curious. I’ll meet a stranger, and they’ll be like - “what happened to you, why is this, why is that?” People would stare and point at me. I can’t keep it a secret. So, rather than letting the conversation be ruled by others, I started my platform to educate people about my condition so I can share and express what I want to talk about, not what people assume or question me about. Growing up, I was confronted with a lot of questions that were based on what people wanted to know about me, not questions based on what I wanted to talk about. Even if I wanted to keep it a secret, I could not. So, why not educate others and raise awareness? It’s good to provide representation and break, stereotypes, and stigmas.”

Ariana sits on her hip. Her legs fold to the side and she smiles knowingly with confidence. She is wearing red lipstick and a red, body-con dress.

“I’m Hispanic, I’m a woman, I’m disabled, and I look different so I’ve had to deal with all kinds of things that made people not want to interact with me. On the other hand, there were also people who felt entitled to knowing about my life just because they could see my skin. Because of that, I thought I had to dress a certain way, that I had to do this, or that I had to that. But even when I did those things, I was still not accepted or fulfilling their expectations, dreams, or whatever they aspired for me to be. I thought to myself - “Well, what’s the point? I might as well do what I want and wear what I want. If they like it that’s great, and if they don’t, that’s fine too. It’s my life. It’s not theirs.” I’m still working on this. I’m not perfect at thinking this way, and it’s not like I never think about it. Especially when it comes to clothing, sometimes I’ll fell the need to cover myself so people don’t look at me, but then I’m like “Wait… Now, I’m missing out on a cute dress.” So, I’ll wear the dress because they’re just going to stare anyway. I even have scarring on my face. I might as well do whatever I want and let them do what they want.”

“I love makeup now, and I can use any makeup brand that I like. I even use glitter. I just have to be careful in terms of application. I’ve been working with brands to get more diverse models. I’ve been doing photoshoots to get the word more out there about EB. I even hope to get into the entertainment and fashion industry so I can change ideas and thoughts about beauty.”

“The main problem with beauty standards is that we’re too focused on what is the normal. When someone doesn’t have the body, the hair, or the skin that’s looks like the normal standard, they’re called different, ugly, or rare. So, my main goal is to change this. I want to help people understand that differences in their appearance shouldn’t affect the way that they live their lives or the way that they feel about themselves.”

“At the end of the day, “normal” doesn’t exist. Only the idea of something being typical exists. Just because we’re used to seeing something doesn’t mean that it’s normal. We can’t label people and push them to the side just because they’re not what someone’s used to. It’s okay if you have a unique lifestyle, a unique story, or a unique appearance. Everyone should be accepted because everyone’s natural existence is valid. And if they can’t except that, that’s their problem, not yours”