“People stare at you because you look different. How do you cope with that and why are you proud of the way you look?”
This is what Klara Leschanz, a makeup artist and photographer living in Vienna, asked me last month while she was taking pictures of me for her newest project.
I loved that question, not only because it made me think about the positive aspects of being stared at because of my rare skin condition, but also because I think it’s a very interesting question. It is something I would want to know about others who are “different.”
It made me think. I have good and bad days. On bad days, I feel intimidated by being stared and pointed at, and seeing the shock on people’s faces. It makes me want to hide my skin and the scars all over my body. I feel that I am not beautiful enough, scared that people won’t want to sit next to me on the bus, and judged because of the way I look.
I have good days
On those days, I accept and love myself. As I wrote in a previous column, I have days when I feel good. I sparkle. I feel proud of myself and even love my scars and showing them off.
On good days, I smile at the people who stare at me, showing them that I am normal. I show them that I am a human being who doesn’t deserve to be judged and stared at. I feel empathy and understand why they stare at something rare and different.
Epidermolysis bullosa is not something you see every day. So, have a good look at it. Look at it for so long it doesn’t feel strange and new to you anymore.
On days when I feel confident, I try to make a little game out of it. I show them my biggest smile. I walk upright and proud. I show them that I feel beautiful and enjoy being in the spotlight.
My tattoos play a big role
I never thought that one day I would have nine tattoos and counting. My tattoos give me confidence and others something else to look at; something that can tear down the wall that separates me from the “normal.”
I am proud of my body, because even though I have limitations and need to take special care of it and give it more rest than others, it enables me to live a fulfilling, exciting life.
I have come to not only accept my scars but also to love them. They tell a story of how brave and strong my body is.
Whenever I feel confident and proud of my skin, I sparkle again. Those days are the best because I think, “Why not love my body?” Our bodies were not created to “look a certain way,” but to carry us around, be a home for our beautiful souls, and allow us to live our lives.
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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