I read something once that has stuck with me, and I want to print & hand out to health care professionals like the one you mentioned here. It goes like this…

My disease is more real than your imaginary medical expertise.

I have on occasion gotten frustrated enough to say, if you could look inside and see what I feel, everyone here would freak out and cry out “OMG it’s a medical emergency”. Probably not the best approach. Lots of good advice in the other posts here. So sorry this happened to you.