I have already written about a very disappointing sequence of conversations with my doctor(s) here, so today instead of copping out and just giving you that link to read a very long, very winding, very stream-of-consciousness post that I needed to get off my chest one day, I will instead write about a magical, imaginary doctor’s appointment that I hope to have one day.
The scenario I always imagine in my head plays out like this: I’ve spent a good hour or two a few days before the appointment brushing up on my research on EDS and other conditions that have the same symptoms I’ve been experiencing, and I’ve compiled a packet with all the relevant information highlighted and annotated (I really do this. Overkill? Potentially.). The day of the appointment, I am sure to get there at least 15 minutes early on the off-chance they are running ahead of schedule and I can get an extra few minutes with my doctor.
I hand over my packet to my doctor when she asks for my oral history, as a way to supplement and complement the disjointed narrative flowing from my mouth that never sounds the way I’ve rehearsed. This time, though, I hit all of my major points: new developments since my last appointment (new areas of pain, dislocation, or hyperextension; recent dislocations or subluxations), improvements, and medication updates. Even though I’ve been thorough in my oral history, the doctor takes a moment to read a few of the highlighted pages I have pointed out to her that might help us as our conversation progresses.
The doctor then asks me how my life is going. How am I feeling? How am I handling any new changes or alterations to my lifestyle? Am I satisfied with our current treatment plan?
WAIT FOR IT.
And then the doctor listens to my responses.
Ah, yes. Listens.
The doctor listens, possibly jots down some notes when she has an idea for how to fix a problem I have named, and then takes a deep breath before responding.
That deep breath will enable her to clear her mind from the day’s appointments, and focus on the problems at hand. I don’t mind being a puzzle, I really don’t, but I don’t like being a puzzle piece. Think of me and my symptoms as its own separate puzzle; don’t approach my case as one of all the other puzzle pieces from the day’s–or week’s–giant puzzle that is the life of a doctor.
So after this breath, the doctor will propose some solutions to my problems, and together we will pick the one that works best for me at that time. Maybe that will involve more tests, maybe a new specialist, or maybe just a new brace, but we will have decided together.
And then I would like to schedule a follow-up as soon as is reasonable to make sure that this new solution is working or to share progress updates.
What a crazy, incredible dream that appointment would be.