A Day in My Shoes: The Small, Everyday Problems of EB

Many people living with rare disease often worry about health issues, government support, insurance, and being accepted by society. But we may also face minor, everyday problems.

I was born with epidermolysis bullosa (EB), a rare condition that makes my skin and mucus membranes very fragile. With the wrong kind of friction, my skin will tear easily, leading to blisters or wounds. When I was little, I was often covered in bandages from head to toe. Luckily, my condition improved during puberty. I still wear bandages constantly, but I am not completely covered in them anymore.

Because of this, I’m used to wearing clothes and shoes that are more comfortable and practical than chic. I’ve often needed to wear open, soft shoes, or leggings instead of jeans. I can’t wear certain sandals, and boots are hard for me. This can be difficult when I want to dress nicely.

As I’ve gotten older, I’ve learned to accept some aspects of life with EB, such as uncertainty. However, there are things I just can’t accept. This brings me to an issue that’s been nagging me the last few weeks.

Disclaimer: This is not a tragic problem, and I know that there are far more concerning issues. But it’s still something that I, and many other people living with EB, stress about sometimes.

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I was looking for the perfect boots. As someone with a skin condition that causes me to blister at the slightest touch, one can imagine it’s not easy finding shoes. I tried on so many pairs. I couldn’t even get most of them on because they weren’t wide enough. I knew if I forced them onto my feet, I could get seriously hurt trying to take them off. (Been there, done that!)

I grew frustrated and sad. Why was it so hard to find boots I could easily slip on? But just before I gave up, I found the perfect pair, which will make a great Christmas present for myself.

In this case, my story had a happy ending. But this is only one example of how “normal” things are harder for me to enjoy.

When I compare myself with my sister and my girlfriends, nails also come to mind. Because of my condition, I’ve lost all of my nails. Luckily, my fingers haven’t completely fused together, which can happen with EB, and I can mostly use them normally. But I dream of being able to get a nice manicure and pedicure.

Is it OK to feel this way?

I hardly ever complain about EB, much less “superficial” problems like being unable to wear fashionable shoes or have trendy nail art. Frankly, I feel bad if I do complain. I think I shouldn’t be worrying about things I don’t really need, and should feel grateful instead. I live a happy, independent life and have found ways to do many of the things I want.

Don’t get me wrong, I am very grateful for everything I have. I’ve learned to see the positive side of living with a rare condition. Life with EB has brought me many good things! But I want to be able to express other feelings, too.

So, can I?

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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.