Taking on New Challenges and Finding Ways to Do What I Love

Last week, I tried something new, something I never thought I could do because of my condition.

Many people told me I couldn’t do it, even though it’s a normal experience for most people.

A new opportunity

My boyfriend opened a restaurant, and I offered to help out during the first week.

I ran some last-minute errands, helped with cleaning and arranging, worked behind the bar, prepared drinks, and even served them. I was on my feet for most of the day and used my hands a lot.

I had always considered working in a restaurant, serving, opening bottles, and holding heavy items impossible.

Limited by my condition

I live with epidermolysis bullosa (EB), a rare, genetic skin condition that makes my skin blister and break with the slightest friction. I was born with this condition, so I consider it normal because I don’t know anything different. But of course, I am surrounded by people with healthy skin that I can compare myself to.

A lot of my friends used to earn extra money working as waiters or bartenders. I always ruled out these jobs for me, even though I knew I’d be good at them, as I’m skilled at working with people. I really enjoy communicating, joking, and getting to know others. But my fragile skin caused me to think, “This is not the perfect job for me.”

My body proved me wrong

Yes, I had sore muscles and could really feel my body at the end of the day, but EB treated me so well. It was like my body realized that I was doing something I really enjoyed and decided to support that.

The forbidden fruit tastes the sweetest

Strangely, it’s the things people tell me I can’t do or should avoid because of EB that interest me the most. I wrote about a similar topic in a previous column. Maybe that’s also why I tried snowboarding and boxing, got nine tattoos and several piercings, and adopted a puppy last year. I want to prove to myself that I will always find a way to do the things I love. It may be slightly different than others, with my own limitations and adaptions, but I will find a way.

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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.