I’m Learning to Be Proud of My Body
“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.”
Not hiding on a good day. (Photo by Klara Leschanz)
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.”
Gaining body confidence. (Photo by Klara Lenschanz)
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.
About the Author
Teresa Zepeda
This is a beautiful article. Very uplifting. My brother had EB and to our family it was normal. I miss him everyday.
Lena Riedl
Thank you for your comment and your kind words, Teresa. I am really flattered. I can imagine that you all miss him... I believe he is watching over all of you from above and knows how much you love him and miss him. Sending you all the love from Vienna! Thank you for reading! <3
Andreas Miller
I as a fellow EB-"patient" just wanted to tell you how inspired and extremely delighted i was when i listened to you on this podcast on youtube where you talked about EB and your life with EB. And now i am so happy to have found this blog too.
Media representation of our "condition", as you aptly called it, is in my subjective view too often focused on showing people with EB as passive victims of a most horrible (and spectacular) disease. It is beyond question that EB has often and for many of us horrible effects, and it is so important to put public attention on the condition, find support and medical attention for it.
But what is also important i find, is for the world to see that we are not merely a disease and our lives are not taken away by pain and being wrapped up in cotton (and silicone) 24/7, but that we are people with beautiful lives to live, each very different, not just -despite- having EB, but actually with having EB.
The positive presentation and representation of being a person with EB that you did, talking about your life and your story, is just awesome and empowering! Hearing of your story and your world made me so, so, so tremendously happy! EB Pride! :)
Du hast mir aus dem Herzen gesprochen!
-Andreas Miller, Germany
Andreas Miller
I as a fellow EB-"patient" just wanted to tell you how inspired and extremely delighted i was when i listened to you on this podcast on youtube where you talked about EB and your life with EB. And now i am so happy to have found this blog too.
Media representation of our "condition", as you aptly called it, is in my subjective view too often focused on showing people with EB as passive victims of a most horrible (and spectacular) disease. It is beyond question that EB has often and for many of us horrible effects, and it is so important to put public attention on the condition, find support and medical attention for it.
But what is also important i find, is for the world to see that we are not merely a disease and our lives are not taken away by pain and being wrapped up in cotton (and silicone) 24/7, but that we are people with beautiful lives to live, each very different, not just -despite- having EB, but actually with having EB.
The positive presentation and representation of being a person with EB that you did, talking about your life and your story, is just awesome and empowering! Hearing of your story and your world made me so, so, so tremendously happy! EB Pride! :)
Du hast mir oft aus dem Herzen gesprochen!
-Andreas Miller, Germany
Lena Riedl
Hey Andreas,
Please excuse my very later reply. I wanted to take time for such a nice, and special comment. I was or well, still am overwhelmed when I get to read words like yours. Thank you for taking time in reading my column and even tell me your thoughts. I can only agree with all that you are saying and I think it's not only important to remind others but also ourselves: we are blessed with being able to live on this world, make so many great experiences and thrive although life gave as a special "package" to carry ;-). I am very happy to read your very positive attitude towards life. It made my day when I first read your comment and it just made my day again. THANK YOU. Hope you are doing well. All the best form Vienna, Lena
Andreas Miller
I as a fellow EB-"patient" just wanted to tell you how inspired and extremely delighted i am about reading about your story.
Media representation of our "condition", as you aptly called it, is too often focused on showing us as passive victims of a most horrible disease. It is beyond question that EB has often and for many of us horrible effects, and to put public attention on the condition, find support and medical attention for it.
But what is also important i find, is for the world to see that we are not merely a disease and our lives are not taken away by pain and being wrapped up in cotton (and silicone) 24/7, but that we are people with beautiful lives to live, each very different
The positive presentation and representation of being a person with EB that you did, talking about your life and your story, is just awesome and empowering! EB Pride! :)
Becky
Great article! I've always been afraid of getting tattoos with EBS. Did you have any trouble with itching or blistering with them?
SARINA
You are a strong person.
(*0*)/
Lena Riedl
thank you so, so much Sarina for your nice comment!! <3
Andreas
Oh, no i thought my comment hadn't been posted for some technical reason or for having too many words, so i tried it again some multiple times. Now they all came in delayed! :DD Sorry for that!
Thank you! :))