Ravenred - - be careful of CT contrast dye. It makes many of us quite weak.

Be sure to tell technician at least 1 or 2 days before the test that you have MG. I did and they ended up giving me 'lite' contrast. (Don't know if it was different dye or different strength or what...but they watched me like a hawk to be sure I didn't have any issues with weakness.)

I have reached the conclusion that very few people (who don't have this illness) understand it. This includes physicians and even quite a lot of neurologists and those that see themselves as MG experts. In fact, even those that do have it and learned to live with it, are occasionally caught by surprise by the unfair tricks it plays on us.

So, how can you expect co-workers, family and friends to truly understand it?

I don't expect them to understand. I expect them to trust me that I do what I can whenever I can. I expect them to understand that I haven't changed as a person. That I am putting the same efforts (or even more) in what I am doing as I did before.

People in general see you as you see yourself, and as you present yourself to them. If you see yourself as a competent person, with physical disabilities, that are merely a technical obstacle you have to overcome, they see you in the same way.

Even if your physical disabilities are not constant, and constantly change they gradually realize that this is part of your disability, and that as hard as it is for them to live with your instability, it is harder for you. They gradually understand that your physical disability is not being unable to walk and require a wheelchair, but being able to walk a short distance and then fall down if you don't have one.

It is a log process for them and for you, with a lot of frustrating moments.
And every now and then you have to remind them (and sometimes also yourself) of your abilities as well as your disabilities.

You will probably also keep on encountering those that think you are "faking" or can do more than you can etc. And you just have to learn to ignore them, no matter who they are, or how well they think they understand you or your illness.