Next Monday will mark the unofficial end of summer, aka Labor Day! While family and friends will head to the lake one last time, prepare for virtual school, and hit the LDW sales, this weekend is really a celebration of workers in America. Celebrating working Americans may look differently for some this year (I feel like a broken record, always having to say that). Many Americans have been furloughed as a result of COVID-19 whereas others have found that their employers are embracing remote work, allowing them to continue working in spite of this pandemic.
Like other various nonprofit organizations, the MGA was no exception. We had to restructure the majority of our programming and services to a virtual platform and think critically about how we could continue to support people with MG on a daily basis. This was not only for the safety of the patients we serve but for the protection of our entire staff, two-thirds of which who are immunocompromised.
A compromised immune system is just one of the many elements of MG that can potentially impact a patient’s ability to participate in the workforce. MG maintains a spectrum of fatigue and weakness that not only differs from person to person but fluctuates for one, same individual throughout an entire day. Additionally, chronically ill individuals may have more “sick days,” require additional doctor appointments or need extensive treatment, forcing them to miss work or take time off. While my MG is technically “stable,” I still struggle with chronic fatigue that ebbs and flows throughout the day, making it difficult to work a typical 9-5 job. I constantly have to take breaks, nap, and even work while laying down because the fatigue is so crippling. It is incredibly fascinating to see our country currently embrace flexible and remote work when just 6 months ago we were living in a culture that was “eat, sleep, breathe, work.”
What will the workforce look like in 2021, particularly for those with chronic illness? Will employers be willing to accommodate the needs of someone who has chronic health issues? Will Zoom meetings be the new norm? It is difficult to predict what the future is going to look like, but my hope is that some good will come out of this pandemic.
Happy Labor Day, everybody! Enjoy some good midwest barbeque, social distance when possible, and enjoy the last few days of summer (or so they say....).
#MGA #MyastheniaGravisAssociation #MGADigest #MGStrong #MyastheniaGravis #IHaveHeardOfMG #ChronicIllness #RareDisease #LaborDayWeekend #LDW
This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.