The Unreliability of Life with Myasthenia Gravis

Myasthenia Gravis (MG) has made my life profoundly unreliable. I suspect I am not alone in this situation.

When I'm invited to a function—a party, dinner, or other event—I'm often unable to give a direct answer. As those of us with MG know, you simply don't know how you will be feeling from one day to the next, or even hour to hour.

What I mean is that I can wake up in the morning feeling fine, but just a couple of hours later, I can be a spent force—lethargic and weak—without having done anything strenuous. This unpredictable fluctuation is a constant feature of my life.

The struggle for understanding

I find that so many people outside of the MG community simply do not understand our situation. They can't see a bandage or a wheelchair, so to them, it's often a case of, "What's your problem?" All the talking and explaining seems to go in one ear and out the other.

My wife and family understand because they live with me and see my struggles day in and day out. Unfortunately, even some medical professionals can be challenging. I have experienced doctors in the Emergency Department (ED) who treat me as though I am exaggerating my symptoms or trying to "pull their leg." They often seem eager to discharge me or attribute my symptoms to some other illness, despite my attempts to explain the unique symptoms of an MG flare-up. You plead for a neurologist, but often to no avail.

Life can certainly be a struggle sometimes, but you have to let it go on rather than give up.

March on, fellow "Snowflakes"!

Regards,
LesJH.