On Going That Extra Mile

On Going That Extra Mile
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Living with a rare disease, all I wanted my entire life was to be “normal” and to fit in. But I’ve since changed my mind. Not only have I learned to enjoy being “different” and thriving with epidermolysis bullosa (EB), but also I think I want to be more than “normal.”

Life-changing decisions

I made that decision a month ago, and my life has since headed in a different direction. By doing so, I fulfilled my biggest dream, something I’ve wanted to do since I was a little kid. I knew it would be hard and require much work. I prepared for it, but little did I know that one can’t ever be sufficiently be prepared for something like that. But that’s another story.

Am I the only one?

To those who have a rare disease, have you ever experienced the same situation — that feeling of always wanting to achieve more and be better and stronger? It’s not necessarily more than others, but rather more than what others think you can be, do, or achieve.

Thinking about my past made me realize that I often voluntarily choose the more difficult path. Maybe I feel the urge to prove to others (or to myself?) that not only can I thrive with EB, but also I can do better than anyone would have predicted.

A new era has begun

Going through recent columns, I found my first writing as the “Girl with the Butterfly Tattoo,” from October 2019. About the same time, I also started a new, exciting phase in life.

Although I am still in a phase of uncertainty and on the path of trying to find what I want in life, I have grown so much in the past year. I have learned so much about myself and about who I am, which feels amazing. But as you can see, we never stop learning. We never stop discovering new sides of ourselves, and hopefully, understanding ourselves more and more.

What am I trying to prove and to whom?

So, I will continue to investigate whether my urge to do extraordinary things comes from the feeling that I always must prove myself. This is because many people falsely believe that living with a rare skin condition stops us from having a “normal,” successful, and energized life.

By studying my behavior, I’ve realized I need to start concentrating on not trying to prove anything. I don’t have to prove anything to anyone. The important thing is to step back, take a minute, and explore whether I am happy with what I am doing. Does it make me proud and content?

From now on, I need to rethink things. Am I taking on that extra mile for me? If the answer is yes, then I’ll pack an extra bag of bandages, because that is what I’ll definitely need!

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Note: Epidermolysis Bullosa Today 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 Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.

My Name is Lena, I am 26 years old and was born with the rare, genetic skin condition Epidermolysis bullosa (EB). Those who live with EB are also called butterfly children. I work with DEBRA Austria, the organization that supports butterfly children in Austria and with another NGO which functions as an umbrella organization for rare diseases in Austria. I am a very outgoing, happy person. I love to be with family and friends, travel, sing, do sports, but I also enjoy being by myself, read, be creative. A few years ago, I was lucky enough to live in Spain, learn Spanish and fall in love with the country, the people and the language. I am a sun, beach and sea person and I love brunch. Writing is something that I love too, and with BioNews and my column The Girl with the Butterfly Tattoo I found the perfect way to combine doing something creative and finding a way to bring my thoughts and feelings into something I and others can better understand. And with every column I get closer to finding my true self and that is a very exciting adventure.
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My Name is Lena, I am 26 years old and was born with the rare, genetic skin condition Epidermolysis bullosa (EB). Those who live with EB are also called butterfly children. I work with DEBRA Austria, the organization that supports butterfly children in Austria and with another NGO which functions as an umbrella organization for rare diseases in Austria. I am a very outgoing, happy person. I love to be with family and friends, travel, sing, do sports, but I also enjoy being by myself, read, be creative. A few years ago, I was lucky enough to live in Spain, learn Spanish and fall in love with the country, the people and the language. I am a sun, beach and sea person and I love brunch. Writing is something that I love too, and with BioNews and my column The Girl with the Butterfly Tattoo I found the perfect way to combine doing something creative and finding a way to bring my thoughts and feelings into something I and others can better understand. And with every column I get closer to finding my true self and that is a very exciting adventure.
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