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"Cherish forever what makes you unique, 'cos you're a yawn once it's gone" - Bette Midler

By polkadotstripes · February 21, 2010 · 3 Comments · 693 Views

I don't think that quote has ever been more fitting than in the case of Melissa Smith. She got in touch to tell me her remarkable story about how despite a disability, which causes the equivalent of third degree burns on her body each day, she has embraced her body and a sense of style.

 

I was born with a rare genetic skin blistering condition, called Epidermolysis Bullosa (or EB as it’s better known). The best way I can describe it, at least the type I have, is waking up every day with new second degree burns, caused by smallest amount of friction or trauma, like turning over in bed. The effects of EB are incredibly visible; I have to wear bandages covering my limbs, I regularly have blisters and wounds on my face and neck, my left eye is scarred, and I’m often in my wheelchair.

As you can imagine, this can have a devastating effect on one’s body image and self-esteem. Especially when people decide to stand staring and pointing in public, or ask the ever-tactful question “what’s wrong with you?” I’m happy for people to ask, but phrasing is important!

 

But among the things that make me happy are clothes. I love clothes. I adore them, and I always have!! I am a qualified practitioner of retail therapy, and I happily brush up on my shopping skills at every available opportunity. I love the look, the feel, even the smell of clothes, all a part of anticipating the first time you will wear them. Several of my friends have requested that, should anything happen to me, I bequeath my extensive wardrobe to them. Which is a bit worrying, now I think about it…!

At face value, an entire day spent shopping often seems like a vacuous waste of time, but clothes and accessories can have almost magical powers. They can make you feel on top of the world, when really it’s resting on your shoulders, and they can help you to love parts of your body that you usually loathe. For example, my feet are a source of great pain to me, but when I look down at my beloved biker boots or patent wedges…all is forgotten (for a while at least!). My belly, distended because several surgeries, is much less troubling when underneath my favourite French Connection or Ducie dresses. And why would anyone stare at my hands when they can look at a gorgeous, one-off bracelet? When I want to hide my sore neck, it’s just an opportunity to wear a great scarf or cowl-neck knit.

 

Clothes make people look at me differently, but in a positive way. More and more often people ask not why I wear my bandages, or why I’m in my wheelchair, but who made my jacket or where I got my dress. How I dress allows me to embrace the fact that I stand out from the crowd, and use it to my advantage. Clothes and accessories level the body image playing field in many ways, too. I mean, how many women are lucky enough to be able to pull off every style, colour, material? Being short, very long earrings and maxi dresses will never do me any favours, but that’s nothing to do with my disability! Yes there are styles and cuts that do more for my body image than others (shorts and tights? Yes! Bodycon? No!), and I can’t wear sleeveless tops without a shrug of some sort, or heels bigger than an inch-and-a-half. But when I wear my favourite outfit, I feel like I could dance down the street, singing “I’m Every Woman”. Because we are all the same really, aren’t we? Our hang-ups are just concentrated on different areas, or sparked by different events. We just need to know our bodies, and how to work with them, not against them.

What we wear can be a great medium for making statement, whether about politics, religion, culture or ethics. But I think the most important statement we can make, in this age of what borders on body fascism is, simply, “I feel great about myself today”.

You can follow Melissa on Twitter and/ or Tumblr


 

posted by
Sun, 21/02/2010 - 15:17

My friend Ida just told me this about Melissa's story

"wow that's an amazing story, she's so brave to talk about it and the fact that she is proud of who she is when any person who doesn't have the same illness will hide in shame over a zit on their nose or whatever"


posted by
Sun, 21/02/2010 - 15:41

Great post Mel!!
Having lived with EB since I was born like Mel (we have also known each other for longer than we both care to admit) I completely agree with Mel's piece. Clothes and fashion may seem trivial to some but I don't think those people realise what a confidence boost they can be and how important they are to every day life. When you have dressings to do every morning it's nice to have to think about picking out an outfit for the day at the end of it. Everyone has body image hang ups and people must think we have more than most but really, we're just adapting to what looks good on us like the rest of you. Everyone has hang ups and things that don't work for them but we're all common in the feeling we get when we find something that we look and feel good in.


posted by
Sun, 21/02/2010 - 17:18

It's great to have such positive feedback! I really want to be optimistic, because EB is something that can easily cause great depression if you give it a chance to.
Yesterday, when out shopping with my friend, I looked in a mirror and said "look how thin my hair is!". Friend just said "Yeah, like people are going to look at that and not your dress, you div". (nice, eh?!) But it's proof that clothes can be a distraction for ourselves and other people. I can't feel comfortable in my own skin, but I can feel fabulous in some well constructed material!! x


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