How Has Myasthenia Gravis Altered Your Career?

[Sharon Haw]

I was a government executive public relations manager until age 64 when I was injured walking to a meeting at our capital building with elected officials. I was off work for 3 months followed by 6 months of rehab several times per week. My job required me to regularly attend high profile in-person meetings and the capitol building had limited handicap access. I developed MG symptoms 3 days after returning to work at the same classification and pay but was reassigned to a 3 year project. I was diagnosed with MG a month later at a neuromuscular clinic in a nearby research university. Due to MG, I didn’t have the stamina anymore to do senior manager work 10-12 hours a day. Worst of all was the open office environment with a constant roar of talking, noise and catching every virus circulating from the 200 people in the project room. When the pandemic mandated remote work, I was much more productive as I gained an extra hour of sleep in place of commuting and had more flexibility in managing my health and energy levels. My MG has been stable since. I just retired at age 67. I am so thankful that my employer didn’t make me stay in the same job and allowed me to work remotely for the last two years. But the executive team did try to force all senior managers back into the open office setting in the summer of 2021 during the 4th wave of the pandemic but my neurologist provided a letter stating it was unsafe due to my medical condition. My plan had been to do pro bono public relations work for a couple of charitable organizations after I retired but I find I no longer have the mental and physical energy required, and I’m a hermit due to being on immune suppressants.

[John Shanks]

I was a business owner. We manufactured countertops. I no longer had the strength to lift the materials. The double vision meant I could no longer travel to measure jobs.  I sold out to a competitor and retired. I had planned to travel in retirement, but its just isn’t safe. The drugs I take compromise my immune system and people have been politicized to the point they won’t wear masks or get vaccinated. God help us all.

[John W Carnahan]

Looking at the other responses, I guess I have been pretty lucky with my ocular MG. Diagnosed in 1974 at the age of 32, I was in a very competitive graduate school environment. Drooping eyelids and double vision seemed like an impediment at first but, after beginning treatment with Prednisone and learning to function while wearing an eye patch, graduate school fell into a near normal pattern. That feeling of near normalcy continued for the next 40 years as I pursued a career in museums and later a broader variety of non profits. I also taught in graduate school for ten years at the end of my “career” developing curricula along with the teaching. My good fortune was in having ocular MG only which allowed me to function easily on a daily basis.

[Amy Cessina]

It hasn’t altered mine. Although I got laid off during the pandemic and found a remote job that I like very much and  pays the same salary and bonus. I have mild symptoms and only. Do not take immunosuppressants. I still do not want to get covid or any other illness since my MG was triggered by a viral infection.

[Amy]

Hello, I ended up retiring at 53 and getting permanent disability a few years later. I worked as a project Manager in a University Library system. The majority of my job was on the computer. If I wasn’t on the computer I was walking all over campus meeting with faculty and staff. I found the last year of my career I needed to sleep through my lunch hour and take a nap in the afternoon. Besides the double vision, I started to stumble and fall. I met weekly with an OT trying to stay employeed. I learned a few tricks for the double vision, but in the end I was told I just needed to rest. At the same time my employer wanted to promote me into a different position that would be even more mentally and physically demanding. That was when I realized I couldn’t keep doing this. At this time my doctors had diagnosed me with a neuromuscular disorder, but because I was Seronegative I had not been given the diagnosis of MG. I miss my job and I miss the people. I also miss the financial security I had. I’m glad I wasn’t at work during COVID. Dealing with my illness has become my full-time job.

[Robert Richardson]

I’m 61yrs, aircraft manufacturing manager diagnosed with gMG 5yrs ago (after 2 years of troubleshooting various, seemingly unconnected symptoms).

My employer accomodation is satisfactory but my symptoms make me a liability in that environment. More specifically, my “recurring, indefinate leave of absence” protects my employment from absences due to IViG treatments, yet doublevision presents personal safety issues on/near equipment, and slurred speech negatively effects critical communication.

Since my first MG “crisis” 2 yrs ago, I’ve been away from work, on long term disability insurance. They’ll hand me off to social security when I get to 65 I’m sure…