Do many of you have family members that deny there is anything seriously wrong with you except for droopy eyes?

My husband deals with my illness with denial, he knows I am very ill, but doesn't like to discuss, or want to learn about it. He is just scared, he has been through 3 crises with me, & a few emergency surgeries, plus thymectomy. So he knows, I can see it in his face. Then I have my mom, that throws out suggestions, but by what she says, I can tell she doesn't have an understanding either, you would think by now she would have some knowledgeof Autoimmune, as my grandmother had Lupus for years, denial again ! I think it is, as the old saying goes, what they don't know won't hurt them.

I think they understand...but they want it fixed....like take a pill...or have surgery...and then, you will be back to normal.....I do my best to be positive in front of my family..

I have learned to hide my symptoms well...I have also learned to compensate for my symptoms...for example...if I have having double vision after a long day at work..I go soak in the tub for 2 hours until I am fully rested...or if I am really tired...I say that I have alot of "work" to do on the computer...and this gives me an excuse to sit down and rest too. I can hide behind my laptop in the lazyboy for hours....however, I my eyes start to strain and get blurry....

I have kept up the "happy face"...until recently..when I crashed. I don't want to be complain so much that they blow me off...does that make sense?

Stephanie

We go up & down so much, that I do that to, until I get into trouble, & I don't have the ups ! Then I have to tell him I haven't been doing well, I go to the neuros, get a extra boost, & we are back to doing our daily routine ! LOL... He aslo hates those extra treatments, he gets so scared.
Mary

This is one of the hardest issues about MG. My family "gets" what MG is all about but there have been times when they don't "want" me to have it! They miss the old me who could do anything. And a few of my family members don't like to deal with any medical issues very often. They are still supportive but I don't lean on them too much when it comes to the MG. I have friends, some of whom have MG, who I can say anything to and they totally understand what's going on.

So sometimes it's you adjusting your expectations of them as well as them doing it! Sucks but not everyone can handle this MG crap!

Annie

Hello and welcome to neurotalk! You are GONNA love it here!

I KNOW exactly what you are talking about! 1/2 of my family either won't acknowledge my MG or just say that I am being "lazy" - these are the same people that saw me when I was really, really sick and in the ICU for days, but they refuse to believe that anything is wrong with me..........

Don't get me wrong. I love them vey much, but they drive me nuts! I also have members who are actually mad @ me for getting this (like I had any say in the matter)

That is why neurotalk has played such a VITAL part in my life......you will meet many of us who have the same problem(s) and it helps to talk it over with someone who KNOWS what you are dealing with.......

Do not PUSH yourself to prove anything to them. You have a disease. You do not need to explain it over and over. You didn't DO anything wrong.

Hang in there! IT DOES get better! I promise you that!

Erin

Hi GI,
Welcome to our forum! My, we've had lots of newcomers here lately. That's wonderful, because we all like helping each other and I'm sure we can help you with moral support if nothing else!

I guess I've been very lucky. At times I have wanted to strangle my family for being too protective. They all have always said I don't know when to quit so they have to tell me, but as I explained to them my limits kept changing as I was getting better. I had to test the limits to find out what they were. Of course, sometimes they were right.

Most of those around me took it on themselves to learn about my disease.

The denial I've run into came with this overlapping condition. None of them wanted to accept that I could have 2 things, and what the neuro's were looking at weren't at all good! We thankfully have a very acceptable answer just this week, so all have breathed a big sigh of relief. But this flare had been particularly difficult and they were all having a very hard time understanding that I wasn't giving up - I just physically couldn't get out of the chair/bed for the last 3 months.

My husband was really scared this time - didn't tell me that, I found out from our doctor - and when I got upset because he kept wanting me to go to work and blew up at him for caring more about the money I make than me, he explained that wasn't it. It was because if I could go to work, they would all know I was getting better cuz they know how much I love my job. At the time I was really just concerned about surviving and I told him that.

Sometimes, straight up honesty is the best. I don't think it's right or fair of others to expect us to bare both the physical burdens of this disease and the emotional ones as well. We try our hardest to be positive, but sometimes we need them to be the strong, positive ones for us.

You can get informative brochures that explain MG at MGFA.org. They can be printed and given to those that you are having "difficulty" with. Explain to them gently that you thoroughly intend to master the disease, but you will need their help, understanding and support to do it, and you have this information to help them with that. Give them the information. Maybe when they see that the disease is serious, but with proper management you have a chance at a good life they can calm down, accept, and help you.

If all that fails, feel free to come on here and pitch a hissy fit, vent, whatever you need to! That's part of what we're here for.

Hope to hear more about you soon.

I have been very lucky that my family is caring and understanding. My dh does the laundry and cooking. I'll be able to help out with that over summer vacation ( I am a teacher). They understand when I am tired and need to rest, or I can't go up the stairs, or my legs hurt. Once in awhile I need to remind my 10 year old that I don't have much energy to MG.

If they can't see it, it doesn't exsist. Sometimes I get so mad, I mean if I had a cast on then people would understand something is wrong, but when someone can't "see" something wrong then they just don't understand. Heck after 18 years of this, half the time "I" don't understand it..LOL

Hi, and ((welcome))
This question always gets to me. It saddens me greatly when I read how family treats some of you the way they do.
I have a great husband, and two daughters who really understand. I'm so thankful for them.

But, there is an area in my life, that I just never know how to deal with it.
My little brother, is disabled and lives in a group home for people with learning, and mental disabilities. I try and take care of his appointments, and such. Basically make sure that he doesn't get over medicated, and that his basic needs are met. I also, try to go to some of his doctors appointments with him. But ofcourse I can't go to all. Just can't.
Anyways, one thing I get often is. "Well, if you are so concerned about the communication between your brother and the doctor, maybe someone should come with him"
And they can be quite sarcastic about it too.
This last time it happened, I blew, I told the receptionist, that I understood her inference, and I didn't appreciate it, as I was dealing with serious medical issues myself, and physically can't go to all his appointments. And for her not to do that to me again,as it was very unfair. I didn't appreciate it at all. That I did everything in my power to take care of him, but due to serious health issues I can't do it all the time. That's why they have staff at his home, to do some of it. (the doctor just has to ask them to come with my brother)
I know, they probably don't believe me, and probably think I'm just too lazy, or unconcerned to be there with him.
But it still makes me feel like garbage. If I had my health, I'd be at every appointment.
Oh, and this particular appointment was about him getting inserts in his shoes...yes, a life threatening problem..
I don't understand people, I really don't.
Love Lizzie