There are a lot of ways I could respond to that statement. I could talk about the fatigue, the aches and pains, the drooping eyelids, the difficulty breathing, the drooling, the possibility of suffering a myasthenic crisis, etc., etc., etc..
I’ve tried to condition myself when asked what’s the worst part about having Myasthenia Gravis to avoid talking about any of the symptoms. Instead, I choose to talk about putting MG in its place.
In my mind, the worst part about having MG is having to say the words, “Myasthenia Gravis”. Not only is it difficult to say and a tongue twister, but it sounds like something atrocious. That’s probably because someone decided to use the Latin term instead of giving it a common name. Whenever a doctor uses a Latin term instead of giving it a common name, it’s never a good sign.
Let’s look at some examples. If your blood pressure is running a little high, your doctor can tell you that you have high blood pressure or they can tell you that you have hypertension. For some reason, hypertension just sounds more severe.
Here’s another one. If your doctor tells you that you have Strep Throat, that’s one thing, but if he or she says you have Streptococcal Pharyngitis, that sounds so much worse.
Or how about this common one? If you have a headache and your doctor tells you that you’re suffering from cephalalgia, you’re probably already thinking the worst even though those two terms mean exactly the same thing.
So, instead of calling it “Myasthenia Gravis”, why don’t we just give it a common name that people will understand, like “Droopy Eyes”. Saying “I have Droopy Eyes” instead of “I have Myasthenia Gravis” sounds so much less severe.
Now, I’m not about to start a push to get people to call MG “Droopy Eyes”, but I am in favor of simply using the initials “MG”. MG sounds less severe than Myasthenia Gravis and chances are, you won’t even have to explain it. A good percentage of people won’t understand what MG stands for, but a high percentage of those simply won’t ask. They don’t want to appear less intelligent, so they’ll just let it go. No explanation needed. That, in itself, takes some of the power away from Myasthenia Gravis.
It’s not that MG isn’t severe or that we don’t want people understanding what MG is; it’s that we don’t want to give MG any more power than it already has. We’re stronger than MG. We have MG, but it doesn’t have us. So why give it more power than it deserves?
Don’t get me wrong. MG is a serious condition, but it’s something we can fight. We’re not downplaying our opponent, it’s simply that we need the upper hand in our battle. When David faced Goliath, David didn’t see a giant; he saw an unbeliever. Suddenly Goliath’s size was no longer an issue. In my battle with Myasthenia Gravis, I can use all the help I can get. I’ll reduce it to MG. It’s so much less intimidating.
It’s all about perspective.