Myasthenia Gravis and the Impact on My Job
Last updated: September 2023
When I first fell ill with myasthenia gravis, as for many, it was a very difficult time. Not only was I trying to adjust to all the changes this ugly disease brought to my life, I almost lost the highest paying job I ever had.
Because I was the main breadwinner of the family, losing my job would have been devastating to my family and me.
It started with ptosis
Why would I lose my job over this disease? Well, I’ll tell you! Myasthenia gravis, for me, began with the drooping of my right eyelid (ptosis).
I was hospitalized for nearly a week and during that time, my eye remained closed and I began to have light sensitivity and double vision.
My left eye worked overtime, so it would tire more quickly, causing blurred vision. Because of this, I would take frequent breaks or naps throughout the day.
Completing my work
Normally, those breaks could have been a problem had my job required me to work in a clinical setting, office, or any other job that requires employees to physically be there.
Formally, I was a nurse but had left the clinical area a few years before this. I was now working for an eCommerce medical company from home. Working from home, we were only required to work 75 percent of our time during regular office hours.
I did just that. I attended all the meetings, trained new employees, hosted required meetings, and always completed my work accurately and on time. I was salaried, so my workday was as long as it took to complete what was necessary for the day or week.
I was almost fired
So, why then, were they ready to fire me? It was because of the frequency of my breaks in order to rest my one good eye.
I could never understand the rationale for that since my work hadn’t suffered. But that’s what I was told by a former manager of mine. She said she had to talk management into keeping me on, which apparently, she did.
My vision was getting worse
As time went on, the vision got worse. I had issues with my right eye and vision in my left eye was also becoming blurred every time it got too tired. This was making it even more difficult to work.
The light from the computer screen didn’t help. My eyes were light-sensitive, so the computer screen, TV, and sunlight were brutal. Sometimes I’d use a cool wet cloth over my eyes (which did help), a screen filter for the computer, and sunglasses outside.
This went on for a few months. The hours were long and difficult. I just worked way more hours than would normally have been necessary.
Starting on Prednisone
My neurologist finally sent me to an ophthalmologist to see what he could do to help. That visit was all in vain. He couldn’t help me.
During all this agony, I had numerous doctor appointments. I also had a treatment of intravenous immune globulin (IVIG), which didn’t help. I had been on Mestinon since the hospital and was finally put on prednisone.
About 2 weeks after starting on the Prednisone, my right eye began to open. It took a little longer for the double vision to go away, but I finally recovered enough that I could work with little difficulty and save my job!
My most frustrating MG symptom is _____.