Living with myasthenia gravis, I invented a job to be able to work

Even though my symptoms started early, I couldn’t make a strategic plan for higher education because I wasn’t diagnosed with myasthenia gravis (MG) until my second year of college. I’d chosen my dream career: physics. You might think of Stephen Hawking as the perfect example of a disabled person in physics, but eight years ago, without a diagnosis, I had no proof of my condition to show the university. That meant I couldn’t access any of the few adjustments offered to disabled students.

We don’t have remote studies here in Algeria, and my health had become even more challenging before the COVID-19 pandemic. By 2018, I found myself unable to walk, not understanding why, and struggling to continue with school. Physics wasn’t just a career choice; it was my passion and the love of my life. I wanted to devote myself to research and unlock the universe’s secrets. But in my second year of college, I had a flare-up period. Beyond not being able to walk, I couldn’t write more than a few lines of equations.

I tried to find solutions, but without a clear diagnosis, I saw no options. In the end, I had to give up. I left my dream path because taking public transportation every morning with heavy legs wasn’t sustainable, and I couldn’t write or work through ideas with unresponsive hands.

It was incredibly frustrating. I was angry, I felt lost, and I still cry when I think about it. But most of all, I worried about my future. What was I going to do?

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Then I heard about a school that needed some design work. I’d recently learned a bit of graphic design, and I could still manage working on a laptop. I reached out to people at the school and learned that they needed more support with social media. They didn’t know much about it and wanted to attract new clients, so I offered to help. It went incredibly well.

Even though my country had no online courses, nothing was stopping me from taking international coursework, right? I started with free online resources before earning an associate’s degree in digital marketing, all while building a network and gaining clients over time.

By then, I had my diagnosis of MG, but I chose to persuade clients to go with me based on the quality of my work rather than disclosing my condition. My approach was simple. Since clients reach businesses 24/7 through social media, I explained that I was more available while working from home and not wasting time on transportation. It worked! I became one of the first freelance community managers in my country, and it was the perfect job for me given my condition.

Sometimes we feel defeated by the disease’s obstacles, but the possibilities are infinite. (That’s a little physics wink!) The world is adaptable, and as people with disabilities, we must work smarter, not harder. Thanks to the internet, almost anything is possible. As you’re reading this, you’re witnessing an example of my new freelance work: sharing my experiences with this condition, an opportunity I never could’ve imagined before.

For anyone facing similar challenges, my advice as a social media manager with a disability is simple: Create content about your passions. I miss physics, for example, but nothing is stopping me from starting a YouTube channel to discuss physics philosophy or help students with study tips I found useful years ago.

With the world becoming more digital, I hope that I’ll eventually return to physics in a way that accommodates my condition. Online education has grown, and I may yet be able to pursue my passion for physics through remote study, with the support and flexibility I need.

My life didn’t go according to my original plan, but it brought me new perspectives, new skills, and, perhaps, the chance to one day circle back to my original dream.

New opportunities arise every day. Sometimes we just need to stay open and resilient enough to recognize them.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.