"You should exercise more" is second only to "but you don't look sick" in the lexicon of things that make me sad/furious/depressed. I try to take a moment, let my feelings calm down a little, and try to understand what the person is trying to say. Usually, if it's a friend rather than a stranger, the subtext of the comment is "I want you to feel better," or "I didn't know this terrible thing was happening to you and I'm surprised." Usually, it comes from a good place, even if it's a horribly unhelpful thing to say.

To the exercise comment, I usually say something like "my muscles don't work the way the average person's do any longer, so vigorous exercise could really hurt me. But thanks for your concern. I appreciate that you're thinking about me."

Does it get through? I don't know. Someone always has some miraculous cure he or she wants to tout, be it juicing or veganism or running or religion or vitamins or whatever. I think we're stuck with people's comments, but trying to take them as people intend them helps me feel less furious. :)

I usually say something like, I would really like to do that, but I try to save my muscles for things like breathing, swallowing,etc. if I do go walking, because I only have enough a set amount of muscle movement, I try to save it for priorities.

I usually say Myasthenia Gravis means great muscle weakness. It is like a weak battery in a flashlight, when you turn on the flash light it lights but goes dim very quickly , running out of energy.If I get to tired MG effects my diaphram and I can not breath , so I will concerve my energy.

First , you should accept that most people won't understand MG. This has helped me to not to get upset. Recently, my son told me that I needed to walk. I told him that I hope I can take walks again, but with MG, the more you use your muscles they become more tired. Our muscles are different, although, I do try to stretch. I just always use my energy for stuff that needs to be done instead of exercise.

I am sorry that you have to deal with comments, like these. Hopefully you will one or two friends that "get it".

Of course, you may vent here anytime because we understand!

"Pocket Full of Nickles" and "The Spoon Theory" are two short stories that may help. Links are below.

http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14088982

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Bruce

The old idea "use it or lose it" does not fit.
It MG it is "use it too much and lose it"

I told my younger sister earlier that I came home and took a nap after work for a couple of hours because I was tired. She said it must be nice. Lol, I don't get offended because she may very well be tired, but I don't think she understands my kind of tired.

Personally my favorite is "drink more caffeine".
I usually say.."thanks and i'll consider it". Deep breathing seems to blow off the anger.

This support group helped me so much so that I really began to not really care as to what people said.
The only way I was able to cope was to realize that if we have a hard time understanding this disease just imagine how hard it is for others.
I am at the point where I will say.....you are right exercise does help so many people.
Or with someone closer I would say....yea exercise usually helps so many diseases it is just that with this disease it is very difficult to manage because too much actually makes it worse.
People really are doing their best to help....they just don't understand.
That is how I think and it helps me.
Ann

I read the first post as I got home from seeing the MG specialist, who greeted me with "well, you look good!" He doesn't doubt my symptoms or diagnosis one bit, so I know it was meant to sound encouraging.

Most people are well intentioned, and several of the suggested replies are excellent, but I am glad that we can vent and share here!

i know the feeling. i usually explain it as like ms but even more intense. i'm tend to be a smiler and say fine when most people ask how i am. i find myself even saying at drs!! but he does his muscle checks and says you can't hide it from me. i think i'm so used to my limitations that i think i am fine. until i think of all the things i can't do-walk to end of driveway carry my 20 lb granddaughter to car 20 feet away,stand and load dishwasher etc .you know what i mean!

It is annoying.....when someone says I look good I usually say that with what ails me looks can be deceiving. If they tell me I need to be more active I respond that my neuro told me it is very important with my form of degenerative MG that I do not exercise. Anyone who doesn't get it.....oh well......it is tough though when just holding your head up or struggling through a day is so hard. We understand. Barb.

I understand! I understand! I understand!

Others may get close to an understanding but they will never fully "Get it".
How close they come to understanding is only dependent on how much they CARE to learn and understand.
Try not to take it personally, it really has much more to do with their stuff than yours.
We find out who our friends (and family) are.... that is CERTAIN!
Love, Becca

you know Deb its not just friends who say that, my PCP told me to get more exercise as it would help my energy levels. I politely educated him about the realities of MG. He admitted to never have had a patient with it. I also emailed him some literature about MG diagnosis and treatment.

Joe