Rare Day In My Life: Growth Through Change Part 5

November 7, 2022

Two days ago, I earned $1,000,000 of pretend money in my Who Wants To Be A Millionaire game on my Amazon Echo! I was amazed, as it was the first time I had won after playing for over a year, but more importantly it reminded me about the time I truly “hit the jackpot” six years ago. After graduating from Rutgers University with a bachelor’s degree in Communications back in 2015, I was extremely bored. School had kept my mind busy, but now I was left sitting at home for hours and hours. My nurses were allowed to drive me around in my accessible van only two years prior. But the government changed the rules, and my home became almost like a prison, making me truly homebound. I didn’t want to keep playing multiple games of Monopoly in a row with my nurses; I wanted to be a part of society and have a purpose and a career. My parents and nurses inspired me to not give up and reminded me that I had run my own web design company and several other small entrepreneurial endeavors since high school.

So, I started my job search. Things were quiet for nearly 3 months. My frustration quickly turned into elation when a healthcare communication firm reached out and wanted to meet with me! I had my mom drive me to my interview, but something felt off as soon as I entered the building. Obviously, I had expected a normal interview and to be asked questions about my skills. Instead, all 7 employees and I sat in the lobby, and I was asked to share my story with the group with everyone saying how empoweringI was – in other words I had been invited to be “inspiration propaganda.” I felt like that cliché cat poster that says “hang in there!” – my rare disease story was put on display to help motivate employees. They didn’t really mention my skills or expertise in any way. I didn’t realize it at the time, but their jubilant declaration that they couldn’t wait to hire me and that I far exceeded their expectations, was a lie I would be told multiple more times.

I heard it all repeatedly… “We promise we will call you in a month once our contract with our client is signed and we have work for you to do!” or “Wait, you need to bring your nurse and your own adjustable desk with you? I don’t know if that is allowed!” or even “We know we told you we were hiring you, but we ended up hiring someone else. Sorry!” I didn’t get the job running social media for a construction company. I didn’t get the volunteer job at the United Way that I wouldn’t be ever receiving a single paycheck from! Obviously, I was treated wrongly due to my disease and accommodations I would need, but I could do nothing about it because the discrimination happened behind closed doors. In November of 2016, my friend who also has a son who lives with Duchenne called me out of the blue. He asked if I would be interested in an interview at a rare disease pharmaceutical company. I almost passed out from sheer joy, and I immediately said yes, yes, yes! 

Three real interviews with three different departments later, I truly hit the jackpot and was hired! Throughout my career search, I felt a mix of frustration, joy, and disbelief. Even though I had a Bachelors degree, my Division of Vocational Rehabilitation coach tried to get me a job as a greeter at Walmart. Even though I was often overqualified, many of my potential employers did not even give me an equitable chance. What kept me going was my belief in my own abilities. I knew what I could do and I had faith in my skills and experience – I just needed to find a forward-thinking and flexible employer. And after two years, I succeeded! I know you will succeed too! In the next post, I will share more about my past six years of impactful work at a pharmaceutical company with an amazingly accepting atmosphere.

Anthony DeVergillo

Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne muscular dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for many who live with a rare disease to be fully included in society.

Anthony’s goal for #RareDayInMyLife is to not only share his challenges and experiences with Duchenne, but to allow for others to share their story for the world to read. He hopes that sharing #RareDayInMyLife will better educate the communities around us in order to be more inclusive of people who live with a disability or rare disease.

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