My Experience Working While Diagnosed With Myasthenia Gravis

Can people with MG work or run a business? It's complicated, says columnist Shawna Barnes

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by Shawna Barnes |

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When I first got out of the Army, I was unable to drive or take care of myself or my son, let alone work. I moved back in with my parents in July 2011 and met my now husband that October.

I used as many Veterans Affairs programs as I possibly could. This included going back to school to retrain from being a combat medic to a graphic designer. For the first time in my life, though, I flunked a class due to the cognitive decline I was experiencing. Learning something new via the traditional academic method just wasn’t in my cards. But I continued to study graphic design in my own way.

I was encouraged by others to pursue a creative outlet. This caused me to discover a deep-seated passion for clay and sculpting, and helping fellow veterans learn to heal and cope through the creative process. I took to sculpting like I’d taken to being a medic in the Army. It made the fight to be heard and get a diagnosis manageable.

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With artistic outlets in my pocket, I pursued a diagnosis of what was causing all the troubling symptoms I was experiencing. In 2018, I finally received a diagnosis of myasthenia gravis. This allowed me to pursue and receive adequate treatment, which opened more doors to a life with purpose. Or so I thought.

Running a business during a pandemic

The following year, I was hired by a local copy and print shop in Belfast, Maine, to be a graphic designer. I agreed to part-time work because it was my first time working  since my medical retirement. I was excited to be working again, to feel like I had a purpose, and to be contributing to our family dynamic.

But in 2020, the COVID-19 pandemic descended upon the world with a vengeance. My boss at the time decided to close the shop. I was doing well with my current treatment plan, I’d had a thymectomy, and I thought I could handle it, so I bought the shop and ran with it.

For 18 months, I did the best I could to keep the shop running. I thought I could do it all and tried to wear the hat of both owner and lead graphic designer. That was a mistake. The stress of running a business in the middle of a pandemic was enough to drive even the healthiest person into a crisis.

Throw in a stubborn business owner with multiple chronic illnesses and disabilities and it was a recipe for disaster. I experienced my first myasthenic crisis on my eight-year wedding anniversary, a little over a year after assuming ownership of the shop. I was in intensive care for a week. Meanwhile, my staff did their best to keep the shop going.

I ran what operations I could from my hospital bed, using cameras and mobile applications to stay in touch with my team and keep things running. But it wasn’t enough. Last December, I decided to close the shop due to my health.

If you’re a frequent reader of my column, you’ll know that the following April, my husband and I moved to Wisconsin to pursue access to better medical care. (Thankfully, we found it.)

I am frequently asked if people with myasthenia gravis can work or run a business. My answer is always, “Yes and no. It’s complicated.” Owning the print shop taught me a lot about what I am capable of, the importance of self-care, and what to look out for when I start feeling out of alignment in my work-life balance.

I made some mistakes I am still paying for, both literally and figuratively. But I also made connections that became the foundation of amazing friendships. And I learned valuable lessons I continue to carry forward.

Being engaged in improving my overall wellness includes sharing the lessons I’ve learned. One lesson is that well-being encompasses more than just physical health — it also involves mental and emotional health. I’ve found that having a purpose improves my mental health. Work is often what that purpose is assigned to.

I look forward to sharing more of this journey with y’all in coming weeks.


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.

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