Learning how to cope with EB and anxiety while growing up

My mother taught me at a young age not to let recessive dystrophic epidermolysis bullosa (RDEB) define who I am or let it get in the way of who I want to be.

I hoped to show others that I was just like everybody else and wanted to be treated as such. However, moving to a small town and attending a new elementary school, where people had no prior knowledge of epidermolysis bullosa (EB), proved to be a challenging start to my journey.

In 1997, information and research about EB weren’t easy to find. As a result, school officials lacked the knowledge to properly care for a student with EB. A couple of events triggered my anxiety that year, including holding an assembly to explain my condition to all the students, and the decision to keep me indoors for recess each day until I graduated from elementary school.

Children tend to say whatever is on their minds. This led to a lot of questions about why I wore bandages or why my hands looked the way they did. It was difficult at times to feel included or as if I belonged.

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It was tough to make friends when I first started school because I never got the chance to go outside and interact with other students. Eventually, a few students came up and shared their interests with me, and I began making memorable friends and feeling like I fit in.

When I was 11 years old, my teacher took the time to listen to my mother about the risks and concerns she had. On days when I had blisters on my feet, I had to wear slippers to school. My teacher would collaborate with me and wear slippers as well so that I wouldn’t feel alone. That really improved my perspective on school, and staff members made sure I always felt included and that I belonged. This helped me significantly with my anxiety.

Always a way forward

When I reached high school, I experienced a feeling of freedom I’d never felt before. I was allowed to go outside between classes, and I could go out with friends for lunch. After years of feeling partially isolated from activities with other students, I finally had the independence to go where I wanted.

However, anxiety was still a big problem for me throughout high school. Even though I had more independence, I was also going through puberty. I was always worried about how my hair looked or if my bandages were neatly wrapped. There were times when I’d be late for class and decide not to go to avoid having the class stare at me when I rode in with my wheelchair.

Once I graduated high school, I began to focus on my anxiety and ways to cope with it. I always believed I was introverted and antisocial, which was true to an extent. However, I began to realize how much joy I got from spending time with friends and family. Even if I didn’t provide much to the conversation at times, I appreciated being included.

I’m now 38 and have been in college for two years studying to be a social worker. I still deal with anxiety daily, but I’ve learned how to cope with it while dealing with RDEB. Now I want to take the experience I’ve gained from living with this condition and combine it with what I’ve learned in college to help others who may need assistance, whether through counseling, advocating, or collaborating.

To this day, I still follow the encouraging words my mother taught me. I make a point of showing others that my condition doesn’t define who I am. I won’t let RDEB stop me from being who I want to be. Some roads might be tougher than others because of RDEB and anxiety, but there will always be a way forward if I look hard enough.

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.