Overcoming employment challenges with epidermolysis bullosa

The process of seeking and obtaining employment can be daunting for anybody. Job searching requires confidence, creating professional résumés, and researching multiple job opportunities to figure out which would be the best fit. As someone born with epidermolysis bullosa (EB), I had to consider additional factors as I began the process of seeking employment.

I was born with recessive dystrophic epidermolysis bullosa, which gives me extremely fragile skin that can tear like paper from friction, constant blistering across my whole body, and numerous skin infections. Not only that, but the condition has also forced my fingers to web gradually over time, and it affects my throat and digestive system as well.

When I was in high school, I had to obtain a certain amount of volunteer hours in order to graduate. At the time, I was only 15 and lived in a small town with limited employment options. I was unsure of what I could offer the companies I was reaching out to, because of my rare skin condition.

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I obtained a volunteer position doing computer work, data input, answering phones, and assisting anyone who came through the front door.

After completing my volunteer hours, I obtained an employment opportunity at the local public library as a student page. I worked part time since I also had to  attend school, which worked perfectly for me because I was on my feet only for a couple of hours each shift. I felt very comfortable with my tasks at the library and believe it was a great learning experience.

I’m currently in my second year of college studying social work. Before this semester started, I had to find a field placement agency that would be willing to take me in as their placement student — a place where I could practice and develop my skills as a future social worker. Again, my options were limited because of where I live.

I obtained my field placement with an agency that assisted many people in my town in various ways, such as with community lunches, clothing and furniture donations, food drives, and a warming shelter for people affected by homelessness. I felt very grateful for the opportunity, and I was prepared to do my best at adapting to my tasks while having EB.

Unfortunately, I didn’t know how much my skin could handle, because I only had experience from one job. I was on my feet for five hours a day for the first few days of field placement and was unable to walk for the rest of the week due to my feet being so swollen and blistered. I was absent from placement for the rest of the week and, unfortunately, I couldn’t complete my placement with them.

Creating opportunities

I was in my fifth week of college at that point and had to find another field placement agency that would take me in with limited time. The agency would also have to accommodate me and support me in completing the placement on time. I can’t explain the amount of stress this added to both me and my skin.

Luckily, I had a meeting with the executive director of DEBRA Canada, an organization that helps individuals and families affected by EB in Canada, through various means of support.

I now work from home, sitting comfortably at my desk in my air-conditioned room, helping others who are afflicted with the same condition as me. Not only that, but I have brought fresh ideas to the organization as someone who is affected by EB.

I am extremely grateful that the organization took me in with such limited time. This opportunity has boosted my confidence, and I feel comfortable with all the tasks required of me. I can also complete my next two placements with them, where I’ll be able to create frameworks for various EB virtual groups that will focus on specific topics for different age groups and subtypes of EB.

Finding employment when you have EB adds additional challenges that need to be considered by both the individual and the company. When we are given a chance to demonstrate our skills to a company and can negotiate any necessary accommodations, it can become a great learning experience for both the worker and the company.

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.