MG Story 5: Understanding MG

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"I was going to start out the month on a more upbeat note, but this is where I am. One of the realities of MG is that other people will never understand it unless they have a chronic disease of their own. People see what they want to see, hear what they want to hear, and assume what they want to assume. 

On May 28, 2014, I had to call 911 and go to the ER. It turned into the worst MG episodes I have had in 17 years. The next day, I posted an email to friends explaining what had happened. 

One friend responded with a 'what can I do?' message; another responded with a 'glad you are ok' message. Is there a disconnect? Absolutely. 

This is perhaps the most frustrating thing about living w/ MG or any other chronic disease. People will never understand that MG is a daily struggle, some days a struggle to breathe. That is what sent me to the ER. I was not admitted to the hospital because my neurologist assured the ER doctor that I was capable of monitoring my own condition. Some people took my returning home as 'He's fine.' Quite frankly, after all these years, I have given up on getting people to understand what life w/ MG is like. They either get it or they don't. 

But those of us in the MG community know that MG does give us good days, does give us days that scare the [poop] out of us, and, yes, even gives us days that kill -- and by kill, I mean we [can] DIE from this disease. It is not just an 'oh, you had a bad day' illness. It is a lifelong struggle."