Sunday, February 2, 2014

"You look great today"...umm yeah...

Oh how many times have i heard those words uttered? Way too many to count... or you sound great, or "that's a handicapped spot!"...really? I didn't realize that when i put my placard up. Like i want to use the spot. Like i want to HAVE to use the spot. My entire life, I have struggled with the proper response to compliments. "Did I sound appreciative?" "I hope my thank you didn't sound egotistical." But now, with an autoimmune disease, I have no idea how to respond. Of course the first two words are easy...a simple "thank you." But then my mind starts I explain that it took hours of rest before i had enough energy to leave the house? Do I go into the intricate details of how i had to instruct my color blind husband where to find my outfit because I was too weak to go to get it. Do i let them know if I'm still in an hour i might look drunk... But I'm not, it's just my stupid illness. My Myasthenia Gravis? People, most people, don't want to hear all that. So, I usually just say "thank you" and smile my crooked smile. Then i sit and worry... do they think I'm not really sick? Was that a compliment or sarcasm? I don't want these thoughts in my head but there they are. Front and center. Most people, unless they've seen me during my many hospital stays or when I'm having a flare at home see the horrible disease this is too live with. I hide on those days. Somethings I can't hide...i can't hide my weight gain or bloated face from the prednisone. I can't hide my left foot dragging. I can't hide my eye when it starts to droop but I do try to hide a lot. That's what was on my mind today. I hope my post helps others not feel so alone.


  1. I so "get" it, Jen! MG stinks ... ALL the time; but it's especially hard to deal with when you're trying to cope with Myasthenia PLUS other folks' reactions to it. Gentle "Flaky" Hugs, my friend!

  2. Great post, you pretty much wrap up what all of us live with on a daily basis. You're not alone, hang in there. Blessings, Maritza