I was talking to some friends from pittsburgh, and told them about the MG, first one said: Oh., that is such a manageable disease and with the mestonin you will feel wonderful, you don't really have any worries
The next one said: Oh I bet you are on cloud 9 with the mestonin., the disease now is really nothing to worry about., and since you have mestonin you will feel like you did before you got the disease.

Am I missing something., I tried to explain , well you still can be on medicine and have problems., sometimes with mestonin other medicine is necessary., you can still have bad days., you can still have a crisis., they kind of poo pooed me and changed the subject.

I guess some people don't really understand.

I think this is probably one of the toughest things to deal with, explaining a disease to your friends and family!

There are a lot of people who don't really want to know about what disease you have! They just want things to stay the way they've always been. Some people can't even talk about anything medical. Nor do they understand medical topics.

You know how alcoholics avoid going to a bar so they won't be tempted to drink and how people who are afraid to be fat avoid people who are fat? Those are just two obvious examples but it's the same with healthy people and sick people. Some people avoid "sick" people like the plague! It's all about fear and not about the person who is sick though.

Mestinon helps MG but it does nothing to stop the autoimmune process that is destroying your neuromuscular junction and making you weak! This is an awful example but here goes anyway. What if someone is wrecking your car with a bat? If the police come by and take the guy away temporarily, you feel relief but your car is wrecked. Then the guy comes back again and starts to wreck your car even more. I'm not very creative today or I would think of a better example. Someone else will probably come up with a way for you to describe MG and it's destructive power to people.

And MG gets worse while on Mestinon. I was on 90 mg. of it, round the clock when I had my crisis. Do your friends know that you could stop swallowing or breathing if you do too much? Or are out in hot weather?

MG is a big learning curve for the person having it. Imagine how hard it is to understand if you don't have it!

Just give it some time. My family "got it" after only a short time. One of my friends never did and we are no longer friends. All you can do is try your best to explain it to them.

Hang in there! You are going through a lot right now. Lots to think about.

Annie

You are so right WW123, we will see this one everywhere!! My own son, a retired navy man, does not want to hear anything 'bout this, esp the genetics....he has a 10yr old princess, & responded as if offended, lol....

I think the major problem comes with the behavior of the disease parameters....it truly does wax & wane, & most ppl who see us can not put this together cuz we often will look ok...& as Annie says:...
Quote
"There are a lot of people who don't really want to know about what disease you have! They just want things to stay the way they've always been. Some people can't even talk about anything medical. Nor do they understand medical topics."

Unlike Annie's experience, my family does not get it yet, maybe my daughter, tho,....but my friend, who has been with me for many yrs, does, cuz she has seen it at work!!!!!

Patience, patience, patience....but it's so hard to maintain......hang in there!!

Dottie

Yeah, for me alot of the problem is that if I'm out and about (work or a friends) that means I'm having a GREAT day! People don't see us really bad, cuz we're stuck home on the chair or couch or bed! My voice has really started reflecting the level I'm at lately, more so than the last bout I had, so people have started to catch on that what they see is NOT representative of what I'm dealing with now.

Dottie's right though, many people - especially those that love you - don't want you to have a problem so they go into denial. The link I posted to MGFA on your thread about hospitals knowlege of dealing with MG crisis has lots of brochures. Some you can print out to help family and friends understand what you are dealing with, as well as how to recognize a crisis. Maybe be should carry them around like business cards, huh?

Becky

Brilliant idea! Brilliant!

Erin

Sadly, you are so right! Most of my family STILL doesn't get it! A few of them call this my "lazy bone" disease and tell me I'm being dramatic - these are the same people that SAW me pushing my jaw up and down in order to EAT, yet they make me sound crazy/lazy.

My sis and I used to be so close, but now we hardly speak. Ever since my dx, she has shut me out. I used to watch my niece EVERY day, now I hardly get to see her - when I ask my sis about it, she tells me that if I want to see Lilli I have to drive over! AUGH!

When I saw my grandparents a few weeks ago, my grandma said she needed some "younger" friends cuz' I was sleeping a lot - and then proceeded to tell me "Try being 81" I told her "Try having MG for 1 day"......I love them so much but they just don't WANT to get it!

I think that everyone (myslef included) expected me to be my "old self" right after my thymectomy - hell, I was entertaining people 9 days after it!

People who do not have our disease do not get it! I was always very type A and did lots of stuff, now there days when getting off the sofa is too much for me, but it will get better!

Just keep the positive people around you and ignore the others. It isn't worth the time or energy. You do not have to explain yourself to anyone! I still fight that urge every day!

It isn't fair or right, but we have to do what we have to in order to stay happy and healthy. If you are tired, rest. No explainations needed. It has been really had on my son and hubby b/c I would always pamper them, but they need to get used to it. The sooner I'm up and about, the sooner I can take care of them again.

True, we do not have something awful like cancer, but we do have a terrible autoimmune disease that can wipe us out in a matter of minutes - for now, there isn;t much we can do about it, except make sure we take our meds and rest when needed!

You do have US! We understand!

Big, big hugs!
Erin

I have a wonderful understanding family, they are great and supportive.

I still get the "how are you" (from friends etc) I say "not bad", and they reply "oh but you're looking so well"
I always think oh well if I'm looking well I must be musnt I!!!!!!!!!!!!!!! Never mind it took 5 minutes to put my shoes on to come out.
its hard, and doesn't get any easier, but I've learnt to deal with it in my own way.

Family can be hard. My husband and my girls completely understand, but, I've had people here and there say things like, well, maybe if you got into a good muscle strengthening exercising, you'd feel stronger, and better. I don't know why, but that one drives me crazy.
Um....maybe it's because as I describe the illness, I always use the example of exercising as something a normal person can do, but because of the repeated moves, I can't do them. And now because of many other medical stuff. like PH.

But for some people, they just can't wrap their brains around the idea, that exercise could contribute to extreme weakness.

Can we all shout...ANNooooYYYyyiiinnnngggg

Love Lizzie

Yes Lizzie I get that one to from people outside of the family. They think if I got fit and just stopped being lazy I would get better.

My Sister and Brother in law have great senses of humour, and are always ready with a quick word if they see I'm stuggling. If I'm having a hard time walking up a hill they will say "Come on RUN" at which we all break into laughter, its a good way of dealing with a frustrating situation. Many a time my darling big Sister has dissolved into tears wondering why her little sister has this disease.
I also have a wonderful sister in law, who would do anything for me, she is just great!!
So I treasure this, and try to put up with people who Can't understand
Kate

That's cool Kate. My daughter is great for that comic relief to break the discomfort. She knows that what I hate worse than anything is for people to be watching me struggling to walk and having "that look" on their faces. So she does things like gently putting her foot up on my behind like she's kicking me in gear and saying somehthing like "move it granny"! It lightens the mood, which helps me. I don't want pity!

I have found the best way to deal with the suggestion to exercise is to explain how the disease actually works (in laymans terms) to people, followed with "MG is the only disease I can think of that exercise isn't on the list of things you should do". It seems like that has help extended family and friends understand better.

Becky