I’m Learning How to Not Be Hard on Myself When Injuries Happen

One of the challenges of life with epidermolysis bullosa is confronting guilt

Lena Riedl avatar

by Lena Riedl |

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While I speak openly about the everyday problems I face while living with epidermolysis bullosa, or how I wish society would view us differently and end the stigma around disabled people, I rarely discuss those really hard moments I have with my skin. This is because at my age, 28, I think it means I haven’t taken enough care of my body. I believe I was reckless and thoughtless.

But I do have hard times, times when my skin or other parts of my body hurt so much that I have to take painkillers. I can’t wear certain clothes or shoes, and I can’t walk properly. While I don’t see taking care of my wounds as a chore anymore, I’m still reminded every day of what happens when I’m not careful every second of the day, and when I do things without thinking of my skin.

This rarely happens, as normally I have everything under control. When I get hurt by others in situations I can’t foresee, I don’t feel embarrassed. But when it’s my fault? I think I should know better. I know what I can do and what I can’t. So how is there any excuse for me not to be careful and avoid situations I know will hurt my skin?

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The sky is the limit

I think I’m very adventurous and brave, and others might agree. I avoid placing limitations on myself about what to try in life. When I was young, no one thought I could live a normal life and do the things I do now. Some didn’t think I’d be able to wear high heels and go to prom like other 16-year-olds. But I did.

I proved to myself that while there are limits to what I can do, the barriers are farther away than anyone might have thought. And that makes me happy and grateful every day. In my eyes, my life is normal.

One lucky butterfly

I’m lucky, because my condition got better as I grew older. Because of this, I can say that I have many days without being in pain, which not everyone living with this rare disease can say, unfortunately. But going through such a long period when my skin was doing so well, and then to have it hurt again, also hurts me inside. I feel that I’ve failed.

I always say that I view my body and myself as a team. My body lets me do so many amazing things. I can do sports and hikes and go on holidays and to festivals. But in return, I’m responsible for taking care of my body, which includes listening to its needs, giving it rest, and avoiding dangerous situations.

But even so, is it fair that I’m so hard on myself? Isn’t it normal to make mistakes and test our limits, even when we might know the outcome? Isn’t it OK to have learned from a situation? Isn’t it better to use my energy to heal my body than to be angry with myself? I think so!

In the end, I used this experience as an opportunity to learn. I accepted that it’s OK to live in the moment sometimes.

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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