Jana,

Thanks for you comments,

First, I am glad that it is not common practice to treat people like that. Honestly, after some encounters with my physicians I found myself asking if I non-intentionally do something similar to my patients. I never thought what they did was deliberate or directed against me specifically. I thought it was some flaw I was unaware of in our profession. ( you may find it funny, but I actually asked some of my patients if they ever felt humiliated by me).

I think there is quite a bit of wisdom in what you say.
I can see how a world-leading expert, being baffled by my illness feels uneasy having to admit this to a physician and her husband who is a scientist. It is much easier to think and say in a patronizing manner-patients and their families don't have an insight into their illness. You are in remission and just don't realize it. And then put a big ?! on the results of my QMG score that didn't fit with what he thought it should be, based on the way I was able to push his arm in his office.

And yes, physicians are competitive (me included) but being competitive doesn't mean that you put people down. My competition is (and has always been) with only one person-and that is me- I want to be better tomorrow than I am today. Not only in my knowledge and technical skills, but in the kind of person I am.

I never tried to compete with my physicians regarding our knowledge about this illness. I did try to share with them what I have learned. But, I can see how they could see this as a threat. It was not only my illness that pushed them to the edge of their knowledge, but also ,apparently, me.

The good thing about it, is that due to this unfortunate combination of having a rare and unusual illness and being a knowledgeable physician, I was forced to find a team of extraordinary physicians, who can handle that. I just have to be cautious not to scare them away!

By the way, wisdom is more important than being smart for a physician.
"it is more important to know the patient that has the disease than know the disease". (William Osler).
A smart physician will know the disease, a wise physician will also know the patient.