Who gets to decide if I have to be careful or carefree?

People shouldn't make assumptions about my life with epidermolysis bullosa

Lena Riedl avatar

by Lena Riedl |

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I recently wondered why we who live with rare conditions often get told how to feel.

I’ve experienced this instruction in many different situations. When strangers see me with my scars and bandages, many tell me, “Oh, no, it must be so awful living with your disease. Your life must be so hard. I could never do it.” Or, in shock, they’ll say, “Something really bad must have happened to you!”

No. I was just born, and my only choice was to live with what I was given. But how I deal with it and what I make of my fate is another story. Just please don’t assume anything about my life.

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A life as full as a butterfly’s wings

I was born with epidermolysis bullosa (EB), which makes me a “butterfly child” because my skin is as fragile as the wings of a butterfly. And yes, of course, I’ve had and probably will have many days when I’m in pain. I’ve had to overcome obstacles that most of my peers will never think about.

But my life is amazing, full of joy and so many possibilities that others might never have the luck to experience. So who is anyone to decide which life is better than others?

I once read a quote that struck me: “A healthy person has a thousand wishes, a sick person only one.”

I never thought about that before. But a friend of mine with EB, in an interview, said the quote was just not true. People with a chronic condition are versatile and have various interests, talents, and hobbies. They don’t only focus on their condition. They have basic needs and desires, just as the people around them do.

Of course, our life would be easier without epidermolysis bullosa, but it’d also be different in so many ways that we might miss if we suddenly lost the condition. I think many challenges, for instance, can have positive side effects, and that’s what I want to focus on.

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.


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