How My Skin Disease Led Me to My Love of Fashion

Allie Fasanella | February 23, 2016

One writer on the healing power of embracing personal style

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Skin is a difficult thing to hide from. It sits atop your bones and muscle, so it’s right there. It’s supposed to be a barrier between your insides and the world. But when you’re born with a rare skin disease that affects only 1 in 200,000, your clothes become what protect your skin from the prying, judgmental eyes of people.

Netherton syndrome, which sounds like a weird small town in Australia, has plagued my twin sister and me since we were babies. I’ve spent the majority of my life covered in excruciatingly painful red scales and squiggles resembling ringworm. I’ve been poked and prodded by dermatologists in studies where they whisper amongst one another, pointing out the characteristics of my disease.

Over the course of my adolescence I would hide: in the bathtub, under covers, in what I wore. Back then, clothes weren’t about representing my insides. They hid my so-called mutant exterior.

Many parties were missed because of flare-ups that would leave me on the bedroom floor wiping salty tears from my chin while feeling sorry for myself. What I wanted was to wear something reminiscent of Jennifer Lopez at the 2000 Grammy Awards to my classmates’ plethora of sweet sixteens, or at the very least, to show my legs. Instead, I existed in a blur of brightly-colored robes, t-shirts and sweats.

Then one day, in the depths of my frustration over the fact that I never felt like myself because of my own surface, I came upon the style of a few key women and decided something needed to change.

I embraced fashion.

I found my style by looking at women who didn’t have to show a lot of skin to be sexy and radiant and infectious. I could be Faye Dunaway in short sleeve sweaters and midi skirts. I could be Diane Keaton in button downs and turtlenecks, or Jean Seberg in her famous Breton stripe shirts. I didn’t need to be like every girl wearing a bikini on the beach. Instead, I would channel Elizabeth Taylor in Suddenly, Last Summer in a spectacular one-piece suit that would conveniently cover my stomach full of angry, red bumps.

The clothes I love wrap me up like a security blanket; they are no longer the covers under which I used to hide. Thanks to the perfect jeans (as frayed by me), or a well-worn shirt tied in a different way, I look in the mirror and I’m not this destroyed person anymore. I’m okay.

Fashion has taught me about perseverance and adaptation. Bravery doesn’t necessarily rise up when my disease does; saying “Screw it, I’ll show my skin today,” doesn’t always feel good. It doesn’t always work. But style does. I’ve found strength in what I wear. I’m comforted by the fact that my skin can be a mess but nobody knows I’m in pain. Sometimes it’s nice to be normal, you know?

If I waited for my skin to be in perfect condition, I would never go out. I would sit in my bathtub and listen to dramatic songs off the Grey’s Anatomy soundtrack. I would wear old hoodies and cry and feel like a victim. But life is never in perfect condition, so instead, we find the right tools to survive. Legendary photographer Bill Cunningham once said, “Fashion is the armor to survive the reality of every day life.” I know this to be true.

Illustration by Katlyn D’Angelo; follow her on Instagram.

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  • http://alcessa.wordpress.com/ alcessa

    Wow, just wow 🙂

  • https://britanniarules.wordpress.com/ britanniarules

    Great post! I feel like this resonates with so many people.

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  • http://www.thestyleventure.com theStyleventure

    Great post! Thank you for sharing it with us!

    Love,

    http://www.thestyleventure.com

  • Fashionably Sparkly

    Many people have different misconceptions about fashion. Fashion is not only about consumer culture, it can also help us to feel good about ourselves and to escape from reality and to forget about our problems for a moment. We should focus more on the positive effects of fashion rather than the negative ones. I loved the article and that quote from Bill Cunningham resumes everything perfectly! 🙂

    Fashionably Sparkly

  • Laurel Anderson

    Thank you for sharing your beautiful story! I used to have to wear a back brace, growing up and too felt trapped hiding in my clothes. I would have loved reading an article like this back as a preteen. Keep up the bravery.

  • http://www.theoliveeye.com Mia Lardiere

    ALLIE. You just did this to my day/wardrobe/overall mental being: https://www.youtube.com/watch?v=qR3rK0kZFkg

    • Allie Fasanella

      that’s FUCKING incredible. jessica is better at life than i’ll ever be!! thx MIA <3

  • http://insertwth.com/ Denisse

    This was very inspiring.

  • elizabeth

    Allie,
    I’ve had eczema my whole life (that whole “everyone grows out of that” thing is a lie, btw), and your post resonated SO MUCH with me. I can remember being younger and having screaming fits with my mother because she’d try to buy me clothes but I never felt comfortable in anything that showed a sliver of skin. I never realized until I got older how psychologically affecting a skin condition can be, especially to a young woman growing up in an era where belly shirts and booty shorts are de rigueur. Once I understood that I could make it cool to be conservative, I think I came into my own. No one likes to see elbows anyways….
    THANK YOU!

    • Allie Fasanella

      HAY ELIZABETH!

      soooo feeeel u girl. so many fights w my mother. i’ve been to therapists that are like ‘just go on the beach with your skin looking shitty!” and im like ‘uh no, that wont make me feel good.’ idk it’s a hard thing to understand unless you deal w it, honestly. it can create the most crippling insecurity rly. thanks for sharing dude!!

  • http://adeliberateimagination.wordpress.com/ CJKEYS2

    you rock, allie.

    • Allie Fasanella

      thx boo, so do u!

  • http://www.infooomph.com/ Cavakia Therlonge

    Netherton syndrome does sound like a place rather than a disease of the skin. Anyway, it’s inspiring to see you turn a negative situation into a positive. http://www.jonas4jewelry.com/

  • starryhye

    Wonderful essay! Thank you for sharing, Allie 😀

  • BK

    This was a lovely article, really excellent. Also LOOK WHAT I FOUND (only 2 and a bit hours from my place)

    • Allie Fasanella

      this is so funny, thank u!!

    • Mariana

      ahahah so funny!

  • Mariana

    “Netherton syndrome, which sounds like a weird small town in Australia” :). One of my best friends has psoriasis, I wonder if it is the same kind of disease.

  • http://www.addictedtolace.com Roshni C

    This is so inspiring! Going to be sharing it wherever I can. Thanks for sharing this, MR!!!

    addictedtolace.com

  • maddie hulting

    wow! this really resonated with me. I’ve had psoriasis since elementary school, all over my scalp, and sprinkling my back, chest, and stomach. I’m really lucky to have a good topical plan to manage it, but when those flare ups happen, yikes! nothing is more crippling that hating the skin you’re in. Its my biggest insecurity, but its part of who I am, so I’ve learned to accept it and to accept myself. It doesn’t affect my self worth and it doesn’t affect my sense of style. plus, stacy london and kim kardashian both have psoriasis, and it doesn’t stop them from being beautiful and confident women, so i am in good company 🙂 thanks for this post, Allie!

    • Allie Fasanella

      thx for sharing maddie 🙂

  • Emma

    This is so wonderful written and I relate to it heaps – I have eczema and feeling like I have to cover everything up has been so demoralising throughout my life. When I was younger it was frustrating not being able to dress like everyone else, and it was very freeing to realise that there was a way I could dress nicely and still hide my insecurities

    • Allie Fasanella

      hey emma! thx for sharing — you’re dope !

  • Lillie

    Thank you for sharing your story. My husband has a medium case of Ichthyosis, and his skin always looks a little pink and/or like his skin is flaking off in scales. It’s hereditary and there’s no cure for it, and he said he spent much of his childhood and teenage years feeling like people only saw him for his skin. One of the most healing things was someone telling him after years of being his friend, “you know people don’t notice your skin, right?” And it’s true–the first time I met him, I thought he had a really bad sun burn. After he explained his condition, I didn’t think anything more of it and I truly stopped noticing. I only remember he has it now when other people rudely tell him that he should ‘be more careful in the sun’ or ‘wear sunblock in the future’.

    I’m glad you found solace in fashion, because having a rock to anchor yourself on is great for confidence. But I bet you, after the first or second interaction with you, people stop seeing your skin because they’re too busy appreciating who you are.