Victoria M. - Diagnosed at age 46
Over the last several months, I've wanted to say, "Welcome to my world!” So many people have complained about having to stay home and how much distance learning has caused their children to regress academically during the COVID-19 pandemic. This has also included complaints about weight gain due to inactivity, Zoom fatigue, altered sartorial standards, and protests over being tested and receiving the vaccine. Overall it seems they’ve gone through the worst. The reason this negative stream strikes me so much is because I have SLE lupus, and prior to COVID-19 I was on sick leave from my job, as a Special Education Instructional Assistant for Los Angeles Unified School District (LAUSD), due to my condition.
Diagnosed in 2008, the disability has been a roller coaster ride of adjustment, that’s largely misunderstood by many. To look at me you’d see the image I project to cover up my scars, health issues, and frustrations.
Besides the astronomical amount of effort it takes me to do the things I used to do quickly and seamlessly, I’ve had to learn how to alter my life to achieve my goals, as well. During the throes of a flare, hospital visit, or operation I’d often ask myself, “How am I going to go to school?” “How, as a professional fashion/feature writer, am I going to update my portfolio?” and “How am I going to educate others about lupus?” Technology provided part of the solution, and through online academic programs and Zoom I was able to not only excel but keep up and attain my goals. I was able to complete a five-year MA program in Fashion Journalism in three years at the Academy of Art University and I was able to work via Zoom for LAUSD.
Despite all of the obstacles lupus presents in my life, on a daily basis, an amazing thing happened when I was diagnosed - my brain kicked into overdrive and took over where my body was failing me. No matter how I was feeling physically or emotionally, I was able to re-focus and accomplish enough for 10 people. I could read more complicated material, I could research better, I could teach others more effectively, and I could be fully present when needed.