I would like to both hug you and shake your hand. My sentiment, less the booty kicking, exactly.
When I suddenly began having a runny nose that just would not stop running it would start by itself and run so quickly that I didn't even have time to get a tissue out. My doctor told me I was just becoming my grandmother. That's a quote. He did however preface it with a little picture he drew for me in his mind of my grandmother pushing her tissues of her sweater sleeve.
The thing is no one can know what one is going through unless they've gone through it themselves. I am such a conundrum and a myriad of oh Scrabble diseases that no one wants to take me on as a patient. But the insurance companies have made it impossible for doctors too do more than see you clinically and then push you out the door if you do not fit into their paradigm.
I don't know that we have any power to literally change the mechanics of what has become a veritable monster.
I found out a couple years ago that there is some kind of invisible list one through four I believe that determines what an EMT or a doctor should do for you if you were unconscious and alone. One being give full treatment and four being give no treatment.. I just found out I'm number three. Who put me on this list or where the list came from or where you can find the list is beyond me. It was the Cleveland clinic that informed me. I don't know that they will ever piece all of this together, but the more I have to explain it the more I am educating others.. I hope anyway.
A few good doctors are making a little headway and looking for patterns in generational groups with similar issues. I was told one commonality with gastroparesis is dyslexia. Never knew my dad had it until I was in my fifties. Also there are types of dyslexia that describe my vision where no doctor could ever tell me before what was happening to me why letters were splitting in half or bending or twisting. Sometimes we learn things on our own and sometimes we learn from places like this and sometimes we can just come here to commiserate or bring some hope. I'm hoping with all my heart that insurance companies will stop dictating to doctors what they can and cannot do. And that more empathetic doctors will turn up on the horizon. But the more we speak out the more we educate in the more we learn. Thank you for your post