Finding the Purpose of My Column
You never know what will happen between waking up and the end of the day. That’s part of life. But waking up knowing that you might come home after a long day and have new wounds and blisters and be unable to walk any farther is something most people cannot imagine.
For people living with epidermolysis bullosa (EB), also known as butterfly children, this is everyday life. We have to always think a few steps ahead about what we can and cannot do, accept limitations, and listen to our bodies.
Living with EB
My name is Lena, and I have EB. I am 28 years old and live in Vienna. I work with DEBRA Austria, a patient organization that supports those of us living with the disease, funding research so that one day there will be a cure.
I’m also a writer, a columnist. I was given this platform to express myself, to tell my story. But that’s not always easy, for many reasons. Sometimes it’s because I don’t know what to write about. I don’t recognize what might be interesting to others. For me, my life with a rare condition is normal.
It takes a lot of strength to sit down and think about what concerns me, what needs to be addressed. Sometimes it’s easier to just live and ignore my condition, along with the struggles, fears, and challenges it brings. I’m not saying that it’s always hard or always has to be on my mind. It doesn’t, at least for me. EB is just a part of me; it doesn’t define me. Thus, writing about my own life is often hard work.
Apart from living with a rare condition that so far has no cure and no treatment, I also face “normal” obstacles, as every young woman does. These include finding my purpose, finding my place, figuring out who I am and want to be, and finding love — love for myself and love for my body, for instance. Our bodies do so much for us, but they can also challenge those of us with chronic illness more than others.
I also want to find someone to love, to share a life with. I want to be happy for every day that is a good day and find the good in everything, even my EB. That has led me to experience so many good things as well.
And this is what I want to share with the world.
Share it with the world
I want to share how I found peace with my condition and my body. I learned to accept my own personal challenge, and I want to share how it is part of me, but doesn’t define me.
I want to share how I used what made me so insecure and filled with self-doubt to my advantage. I realized what a good team my body and I can be, if we both accept each other and work together. I want to share my story of self-acceptance and self-love. I want to invite others to take this journey with me, to unite and learn from one another. I want us to thrive together and make this a world of diversity and acceptance.
And this is what I needed to be reminded of. It’s why I share my story, why I go into a one-on-one conversation with myself so often. I want to show others that every one of us has so much to offer, with a chronic condition or without, with insecurities or without.
I want to share that life is a journey with ups and downs. It has happy times and times when we need to be reminded of our spark, of how far we’ve come. I want to share that life features dreams that are still waiting to be met.
And I want my column to be a reminder of what makes life so special, of how we have it in us to love and be happy, to make our lives wonderful.
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, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.