Diagnosed During A Pandemic
Last updated: August 2022
March of 2020, the country shut down. And at the end of that month, it seemed like so did my body?
I began to have a slight eyelid droop for a couple minutes, then it went away. Strange, but I just shrugged it off. I actually wasn't even sure if it was my eyelid, my vision, or even if I didn't get enough sleep.
During one instance, I asked my cousin if my eye was doing anything weird. She told me my eyelid was drooping pretty bad, actually. Still I didn't think too much about it.
After about a week of this happening on and off, I called my eye doctor to see if they were seeing patients. Because of the pandemic, most doctors weren't seeing any patients in person. My eye doctor would have been willing to let me come in, due to what seemed like an emergency, but he was actually sick himself.
He told me to go to Wills Eye Hospital emergency room. Luckily they were taking patients. After various physical tests and blood work I was sent home with a few possibilities of what could be causing this, but no certainty. I was also told to follow up with a neurologist.
Trying not to panic, it took a couple months to get my test results and get an appointment with a neurologist. Looking at my results, it said I showed specific antibodies which align with a myasthenia gravis (MG) diagnosis.
Being that I have never heard of this and MG is considered a rare condition, I had to do some research for myself. That was scary! I didn't want to think about what I read too much until I spoke with a doctor, so I limited my research until I had my appointment.
First neurologist appointment
Finally in August 2020, I had my first neurologist appointment. I was extremely nervous about what would be said. My doctor told me all about MG and how the symptoms I was experiencing were somewhat mild so far. Mild? So far? That sounds terrifying.
It was also terrifying being told that COVID could essentially cause exacerbation with my symptoms and puts me in the "high risk" category. Anyway, it was an extremely informative appointment and it actually really calmed my nerves after finding out more information and getting all of my questions answered.
A new life?
So what does this mean for me and my future? I was prescribed Mestinon and was instructed to take it 4 times a day. Going from no medications one day, to the next day starting a new life of not only having to take medicine daily, but 4 times each day was an extreme adjustment.
I used to look at my older people who have to take their medications everyday and hoped I wouldn’t have to be like that. Then it happened to me at the age of 29. Learning that I will be on this medication (and possibly more) for the rest of my life, and not being able to be as active as I'd like to be was such a harsh reality that I was compelled to accept in such a short period of time. All during a global pandemic.
Accepting my diagnosis
This was one of the saddest times of my life. Even though I didn’t want it to be true, I couldn’t just sit there and hate the world. So I fully accepted my diagnosis. I researched some more using the pamphlets, websites, and online support groups my neurologist suggested. I began to realize what options I had in order to turn this into a positive situation.
In December 2020, I finally grasped that my diagnosis wasn’t the end of the world. Even though it seemed like all of 2020 was the actual end of the world, without my new diagnosis. After I came to terms with what my new life would be and the year came to an end, I started looking forward to a brighter future and what the new year had in store for me.
How helpful is following a daily routine for managing your MG?
Join the conversation