I just don't understand people....we were to go to a family gathering this past saturday about 2 hours away, well that morning my ocular myasthenia decided to be nasty and I knew I could not drive the distance., between the glaucoma, cataracts, allergies and the mg....it wasn't happening., I felt badly because there was an Aunt who came from Florida, and I know she won't be back up ., but nothing I could do., so I called and advised I couldn't come because my vision just wasn't going to let me. The next day I spoke to another Aunt and she said" Well we just don't know why you couldn't come you know the roads very well"" So I guess because I know the roads well seeing everything in double is okay.

I'm sorry you experienced this type of rudeness. Some people just don't try to understand -- it's all about them.

I too get bad double vision from time to time. You know being behind the wheel is the last thing you should do. Would they rather you have an accident and injure yourself and/or someone else. You are being responsible, so try to not let their ignorance make you feel guilty.

It has been my experience that people who are very self centered, do not accept reasons for things like this. It is really all about THEM and not you. Self centered people typically lack empathy for others.

Also I have found that people who lie a lot in their lives, respond to the truth sometimes and think it is a lie too. (and the same for bigots!). This is called projection by psychologists, and really reflects back on them.

It is always painful when people/relatives refuse to validate you. People with chronic illness always report this behavior. It is sad but unfortunately common.

I hope you can call the Aunt that you wanted to see & visit with and tell her how you wished you could have made it.

I wouldn't worry much about the others that don't understand.

No one offered to come and get you?
I know it would have made for a 4 hr round trip and $ of gas for them, but if a rare family gathering - someone could have offered.

I'm sorry you were treated that way. I think it is hard for people to empathize with someone who has a chronic illness with symptoms that are hard to see. The "but you look so good" syndrome.

My double vision is always present, though it's much worse with near vision, rather than distance vision. Hence, I'm generally not too limited with my driving, but I have a lot of difficulty seeing things in stores, computer work, etc. I chose to retire early due to the vision issues. People don't understand how I can drive (most of the time), but I can't work full-time.

I'm really sorry that you did not get what you needed from your own family. I completely understand.

Someone who's intoxicated can know the roads really well too but it doesn't mean they should be driving them! When MG is bad, it is like driving drunk. You can't see and your response time is slowed. Maybe tell them that next time. Do they want you, or others, to be in danger?

Like Jo*Mar said, someone should've offered to pick you up and take you!

It's usually those who are insecure that go straight for beating up on others. It's not an excuse but it does help to understand why.

I'm glad you came to your family here to vent. I'm sorry you missed such a nice event. MG keeps a lot of us from seeing people we love.

Annie

I, too, am very sorry about how you were treated. I think the only way people who say things like this will ever understand is if they could spend one day in our bodies. I wouldn't wish this on anyone, even on those who treat us so badly.

I'm sure you felt bad enough that you weren't able to make it. You didn't need your Aunt or anyone else making you feel worse.

It's hard to let things like this go but over the years I have learned that if people don't understand why I can't do things then it's their problem not mine. I simply say a little prayer for them and move on. I no longer worry about who understands and who doesn't. I know what I can and cannot do and no longer push myself to do what I cannot.

You made the correct choice to stay home and we who have MG know exactly why you did

Shari

this is always an issue for me. I dont look sick so I guess Im not sick.
I recently had a similar event and since it was at night, I knew I wouldnt be able to drive back so I told the partygiver/homeowner, the day of the event, I think Im going to have to pass, I overdid it the last few days and I just cant get moving today, and my eyes will never let me drive later that night.
they were not nice about it, and actually insulted me about how I seem to be fine enough to do what I want to do, but use my illness as an excuse so I dont have to go to a social event if I dont want to. They said, nice to have a crutch like that, isnt it?
Then they said another harsh thing, so instead of just letting it go, I felt kind of frisky, I let them have it right back.

Now I avoid people who are idiots.
I dont have to validate anything.
OFcourse, theres nothing on earth more I love doing than waiting for my nurse every month to stick me so I can be on an IV so I can see well enough to drive and feel strong enough so I can go out to dinner with my wife and kids....yeah........this is something I love, doesnt everyone want to be wired up to IVs with foreign substances being pumped directly into their bloodstream, yeah....I love this stuff........

People are such idiots sometimes.

The truth is that this illness is very hard to understand. More then many other diseases.

Even we, who live with it 24/7 for quite a few years, have times when we get it wrong-think we can do something we can't (and pay the price) or avoid doing something we actually could.

Neurologists with a lot of experience, who have seen many patients, get confused. I have heard of so many patients with obvious MG symptoms, who were told they were in remission. Or patients with severe MG, who were told they only had a mild disease.

I recently saw a patient who when being on the verge of requiring respiratory support, was told by a neurologist-an MG expert, that he is out of shape and needs to exercise more. (fortunately, he was referred to me for some minor hematological problem, and I referred him for a sleep study/pulmonologist who gave him a bipap ASAP).

I believe that in most cases it is not because people are nasty or want to hurt you, but because they truly don't understand.

When someone says to me something like that, I just calmly reply that I was very unwell that day. I don't go into exact details, because I know people who have never experienced this illness, will not understand.

I then write in my book, blog or MGA forum-The details, how I felt about it, and anything else I feel I need to share with someone who could actually understand.