A few years ago, a colleague of mine seeing me in a wheelchair with all my "gadgets" came over and said- forgive me for asking, but what is your illness?

I answered-Myasthenia Gravis. He looked puzzled and said-Are you sure? I thought MG was an illness you can fully recover from and lead a completely normal life with.

I answered- Did you ever have a patient who died from Hodgkin's disease?

He said-yes.

I said- But the majority of patients with Hodgkin's disease fully recover from their illness, so how is that?

He never bothered me with such questions again.

The point is that it may be true that most MG patients recover from their illness and can lead a normal life (or at least appear as if they do ) but unfortunately not all of them.

When people tell you about patients who recovered from MG when you weren't so lucky (yet), they can do it because they want to encourage you and give you hope (which is good and well-intentioned) , or because they are criticizing you for not "putting enough efforts" into getting better.

Some of them also have "good advise" such as-why don't you consult a leading expert, why don't you eat this or that, why don't you try A, B, C and D which really helped my cousin's daughter's best friend etc etc.

Most of those people know zilch about MG and even if they mean well, I admit that it can sometimes be quite annoying. Even though every now and then they do have good suggestions and sometimes even excellent ones.

I have learned to thank them politely for their interest, promise to look into what they suggest and even discuss it with my neurologist. And when they ask me why I see him and not someone "famous", I answer that he is the best and no one knows or understands MG as much as he does.

Or sometimes I say-I have a very rare type of MG, so it is probably different from what your cousin's daughter's best friend has. And if they insist I draw them a picture of the NMJ, and start explaining...That usually ends the conversation.

And no, I do not think that "positive thinking", "optimism" or "truly wanting to recover" (or as you say: "where there is a will there is a way") make a difference in your chance for recovery. I think those can help you adjust to your illness and have a better quality of life.

I also think that people who constantly tell you such things make it harder for you to adjust to your illness and have a negative impact on your quality of life.