Our skin is a big deal – literally. It’s the largest organ in the body, has a surface area of around 2 square metres and is one of the most complicated organs we have. The skin is our body’s coat. It protects us and we probably all take this amazing organ for granted.
In this edition of Inspired, we would like you to meet Ariana, a young woman with a very different relationship with her skin. Ariana lives with rare skin disorder, often described as having skin so fragile that it seems as delicate as a butterfly’s wings.
This description sounds romantic, however it does little to educate us on just how challenging life can be for those with this condition. Ariana knows just what it is like to be fragile, yet tough and determined. We are so pleased that Ariana has shared her story with us here at Inspired.
Tell us about yourself
My name is Ariana Covarrubias, I am a 19-year-old college student, and I recently completed my second year studying Mass Communications. I was born and raised in Los Angeles, CA and still continue to live here with my parents and little brother.
What has been your journey of disability?
My journey with my disability has been unique and often extremely challenging. I was born with a rare skin disorder called Epidermolysis Bullosa. Although the phrase “skin disorder” may make it seem as not a big deal, it is the complete opposite.
In fact, the skin is our number one main organ and for people like me with Epidermolysis Bullosa (or EB for short) it is the organ that doesn’t function properly. EB is a genetic skin condition that can only be obtained at birth and is caused by the missing protein that holds the two layers of skin together called Collagen 7. EB causes my skin to be extremely fragile. (When I say extremely fragile, I mean going to sleep and waking up with missing skin somewhere in my body) type of fragile.
Daily activities that the typical person take for granted, such as walking, eating, showering, can cause open wounds that become extremely painful and take weeks to heal (if at all). EB is something that I have never taken lightly, as it is slowly deteriorating my body, my ability to do certain things and over the years taken friends way too soon. As mentioned earlier, my journey has been challenging and I would not wish this life upon anybody, but this journey has also allowed me to positively impact and inspire others and for that I am extremely grateful.
Are there things about you that people misunderstand because of your disability?
A couple things that are easily misunderstood are the constant stress that the required bandages bring, as well as the severity of this condition. The word skin confuses people and they quickly believe it’s nothing minor or that it can be cured with some vegetables or an over the counter ointment.
Sadly, it can’t be healed and in fact EB is a life-threatening condition as it slowly starts to impact the organs or can also lead to skin cancer. I talk about needing bandages as also being misunderstood because people have yet to comprehend that bandages are part of our daily routine; applying bandages is something that is done once and sometimes twice a day. Bandages are vital for me because without them, my wounds would be more prone to infections. This routine isn’t easy for me to go through either, it requires doses of strong pain medication, patience, expertise and more pain medication. The areas I maintain wrapped on the daily are my feet, thighs, back, and hands and it takes up to two hours to complete every single day.
Who inspires you? Where do you get inspiration from?
My inspiration comes from the EB community that I’ve been able to be part of. I’ve met people from different states in America, and even different countries. Their strength positively impacts me every single day and helps me to not give up. This community are who motivate me to be part of sharing my story, to spread awareness and show the world that being labeled as different is okay and that that shouldn’t stop us from accomplishing our goals.
Which three words would you use to describe yourself?
Three words I would use to describe myself would be motivated, passionate and strong.
I would tell my 18-year-old self that not everyone will be cruel to you.
What is one thing, experience or person you have had that completely changed your life?
In 2015, I was awarded the Spirit Award by DEBRA of America, a non-profit organization that thrives to help individuals with Epidermolysis Bullosa. At that time, I was only 16 years old, I was struggling in high school, struggling to accept my EB, and struggling with fitting in. However, my ability to push through and always bring positivity no matter the circumstance is what allowed me to win this award. This life changing event and the award that I see every single day after I wake up is what pushes me to always give the best of me, no matter the circumstance.
Who or what has been the most significant influences on who you are today?
My family and friends play a HUGE role on who I am now. They may not have EB, they may not know what it’s like having wounds that look like third degree burns on their body, and they may not know what it’s like to be questioned everywhere they go about how you look, but they do know how to accept an individual for who THEY ARE as a person. They always push me to be the best version of myself and not let EB nor people who don’t accept me, put me down.
What’s one thing about you that surprises people?
I think something that would surprise people to know is that I am in pain every single day of my life. Literally. It is extremely rare where I have a day that my open wounds and blisters don’t cause me discomfort or pain. It’s a surprising fact because my actions don’t always reflect my chronic pain. Sure, there’s days where I’m literally walking on my toes to the bathroom because the pain to put my feet completely down is unbearable. However, I don’t broadcast those days. People only see me in my life on social media share image of when I am out and about at my concerts, my days at college or the days I’m out and about in my community. What people don’t see is when I’m crying in bed because the medication just isn’t cutting it or when I had to cancel plans because putting on shoes would cause more harm than good. It is these private moments, that would surprise people the most when they look at how I am able to move about with my public face on.
For what are you most grateful today?
Something I’m grateful for is having access to bandages and medications. Having my feeding tube and wheelchair. Having the resources that I need to survive this cruel and uncontrollable illness.
Knowing what you know now, what advice would you give your younger self?
Although I’m only 19 years of age, I have learned and grown so much the past year. I would tell my 18-year-old self that not everyone will be cruel to you. I would tell myself to not have my guard up so high because there are people out there that do see me past my scars and bandages and are willing to stick by my side.
Do you have a funny story involving or relating to having your disability you can share?
Surprisingly enough, I have gone through funny experiences involving my condition. One of my passions is attending concerts as they are something that alleviates my pain and brings so much joy to my life. I personally find it so funny when people see me strolling around the venue in my wheelchair but are shocked to see me stand and dance during the actual concert. Who knew someone that requires a wheelchair could also walk and move?
Is there something that you would like people to know about you or about people with disability that they might not know?
If I could tell people one thing is to always be accepting of other people, no matter their race, color, gender, anything that may differentiate them to you. We never truly know what people have gone through or what they go through on the daily so we should always be willing to learn and accept others for who they are, not for what they look like