Sometimes my body has to remind me that I live with a rare disease

Reassessing my abilities and limitations while living with EB

Lena Riedl avatar

by Lena Riedl |

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Occasionally, I forget that I live with a rare disease. For me, that’s a good thing. It means I’m doing well enough that my condition doesn’t bother me on a day-to-day basis.

But sometimes, my body will say, “Hey, stop! You have a condition to consider. You need to take some time to rest and listen to me.” When that happens, it hits me hard.

I was born with the rare skin condition epidermolysis bullosa (EB). I have recessive dystrophic EB, which is often more severe than the dominant form. However, perhaps due to luck or genetics, my condition isn’t as severe as many others with the same type of EB. So it’s possible for me to live independently, go to work, play sports, do chores at home, and take care of myself.

Big changes

I moved into my own flat a few months ago. I first moved away from my family six years ago, when I was 23, and not to brag, but I’d even ventured to another country where I didn’t speak the language. Since then, I’ve lived in three shared flats. But this is the first time I’ve lived on my own, and it’s definitely different.

When I shared a flat, I didn’t have to do every task alone (even if the workload wasn’t always shared equally). I could always ask for help.

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Then, about two years ago, I moved back in with my parents because some big changes in my life had thrown me off course. They were able to help me with many things, including caring for my dog, Nala. Although she’s my responsibility, my parents would help by taking her for a walk or looking after her.

But now, I have to get all my chores done and take care of Nala by myself. I also started a new job in February, which means I’m now working five jobs. I like to keep myself occupied!

Surprised by my own body

Unfortunately, my busy schedule means I sometimes feel completely exhausted by the end of the day. The last few tasks on my to-do list, like putting away the dishes and getting ready for bed, become extremely challenging for me, and I often do them with my feet hurting.

At that point, I realize how much of a difference it makes to live alone. Before, my boyfriend would walk Nala in the evening and put away our dishes, or my parents would make me a cup of tea before bed. The little things they did made a huge difference in my life with EB.

I’ve become so used to my body and me being the perfect team that it shocks me to encounter limitations. Sometimes I push my limits, but I must also accept that there are things I simply can’t do.

Fortunately, my body still allows me to do many things that make me happy. But now, given all the changes I’ve experienced recently, maybe it’s time to rebalance. I need to find new ways to do the things I enjoy, while also accepting the limits I didn’t know I had.

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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