If we are to control our own destinies, we have to switch our brains back on and come to our medical consultations with plenty of research done, able to use the relevant jargon.
Of course, as soon as you start to do SERIOUS research into anything medical-- and use the appropriate "jargon" (though I prefer "terminology" here because some of it is very definitely correct in a legitimate sense) then you begin to realize that you sound very much like a person who is at least
possibly Munchausen.
So while I can say that somewhat tongue-in-cheek, it is NOT a good feeling to be in the 1% of patients with an unusual presentation of some unusual condition... and to get the feeling over and over and over again that
you know more about current research and best practices than the physician(s) that you're dealing with.BTDT, got the teeshirt. It's a scary thing.
When I said to a specialist, "I was wondering about this..." and got a blank look back, I began to worry.
My favorite line from the article, "The dangerous allure of the information we want to hear is something we need to be more vigilant about, in the medical consulting room and beyond."
I keep hearing this about my son, "There are some red flags but he doesn't qualify for x, y, or z." That's exactly what I want to hear, that nothing needs to be done, but something in my mommy gut says I should keep digging.
