The Fine Line Between Finding Purpose With EB and Letting It Define Me

Lena Riedl avatar

by Lena Riedl |

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I live with epidermolysis bullosa (EB), a rare skin condition that makes my skin as fragile as the wings of a butterfly. That’s why we are called “butterfly children.”

I like that name. It makes the disease sound beautiful and innocent, even if it is not. But it’s not all bad. You can definitely live a happy and fulfilled life with this condition.

Butterfly child

People always ask me, “What happened to you? Why are you wearing bandages? Does it hurt a lot?” and so on. I’ve been asked so many questions concerning my condition, ranging from obvious to funny to intimate. I understand that. If people don’t know something, they get curious.

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For most of my life, I’ve answered them patiently. I believe it’s important that people know about EB and different conditions, and learn that different doesn’t mean “strange” or “bad.” EB may be different from what people are used to, but it’s normal for those who live with it.

It gave me purpose

As patiently as I answer questions and work to raise awareness of my condition, it’s not easy to do. Though I’m used to living with EB after 27 years, it still bothers me sometimes.

I work with the patient organization DEBRA Austria, which supports people with EB. I’ve talked about life with EB on TV and radio, and in newspapers. I’ve given speeches nationally and internationally about my experiences. In a way, I found a career path through my condition. I enjoy telling people what I can do and how fulfilled my life is. It often surprises them that my life is very similar to theirs.

What I love most is giving other people with EB hope and demonstrating that it’s OK to show their scars. I encourage them to do whatever they want, to try to find their own ways of doing things, and to challenge their limits.

Should it define me?

Still, I don’t want EB to define me. I don’t want to just be the person with a rare condition, and I don’t want it to be my only purpose. The world should see more than my condition.

I want it to be a part of me, and I’ve worked hard to accept it as one. I’ve worked hard to love my body and the uniqueness of my skin, to be confident in myself (most of the time), and to find ways to do everything I want to do. I am very proud of that!

Walking the tightrope

There’s a very fine line between letting your condition define you, and letting it make you special. I have faced this dilemma a few times already, and it’s one I need to be well aware of and reconsider often.

Does it still feel OK giving my condition this much space? Am I doing it because I want to or because others expect it from me?

When I listen to my gut, I can usually distinguish between talking about EB as my job and talking about it because I want to. But what I would like to know is: Am I in control of how it defines me?

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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.

Comments

Andreas Miller avatar

Andreas Miller

Hi Lena!
Your article also inspired me to think about EB in the context of identity and also connect it to some thoughts about "healing" or a "cure".
I also do connect EB to my identity. And then sometimes i wonder, what will happen to that "part of me" if it will be "curable" one day... That goes so far that i get sometimes a bit angry about the concept of what "healing" or "cure" means in a supposedly "common mindset", even if that might sound crazy or even blasphemic: As much as sometimes i get desperate or angry about having EB. As much as i condemn it sometimes, and as much it also bothers me, and often it frustrates me, it still is a part of me. And the idea of it being a "problem", a "lack" or "flaw", that needs erasure, I reject that concept of healing strongly!
Also, "healing" is more than having no wounds, it also entails so many more factors, like environmental factors: Very often having EB doesn't bother me at all, when i feel just fine, even some degree of pain is completely irrelevant. Or when its aspects don't come into play in a way, that are totally harmful to me or cause suffering. I can be completely fine with having EB. Although I get aware of the fact, that EB can kill and it can cause so, so much suffering. And I really also don't wanna say, I am thankful for my suffering, or the pains that EB caused me, don't get me wrong on that. This really is a topic without black or white or easy answers...
But even when some day, EB becomes "curable" (and i do think that might happen in our lifetime) I still won't lose all that. I might not have big wounds anymore, I might be able to walk without problem, not having to do bandages every day etc.. But my experience and my identity won't be extinguished, I will still be born like that, have made these experiences, a lot of which i can also not really say with all my heart "I am thankful that i have made them", definitely not. But for a ton of it, I am thankful and I am proud. :) So in this sense "I am not my EB" but noone will ever take my experience and what i hold dear to my identity (and living with EB is and will be a big part of it). I wouldn't be "me" without "my EB". :D

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