Script Doctoring
I’ve been having a number of communications problems in my interactions with my doctors at Kaiser lately, and it’s becoming one of those things where the burden and onus entirely is placed upon me to sort out, and that’s exhausting for the actually autistic and chronically fatigued, to have to be constantly micromanaging things just to make sure you’re getting the right healthcare.
First it was the suddenly-fluid plans for due diligence on the fatigue, which had been decided in-room at an appointment to be one thing and then suddenly changed to another thing without explanation. I ended up having to slowly and methodically explain to my doctor why I was confused, what caused the confusion, and then detail how at my old nonprofit even before my autism diagnosis we’d discovered that for any potential changes to processes, procedures, or plans I needed to be taken through the steps of how and why, otherwise what I now know to be my PDA will kick in and my brain simply resists.
Then it became me asking a simple question: given that when I got bitten by a cat they gave me a tetanus/diphtheria shot even though I’d asked in the room about the fact that in a few months, come January, I’d be due for the full TDAP shot anyway—given this, what should I be looking to get come January? The answer I got back was that I was up to date on TDAP, but what about the overdue pneumococcal pneumonia shot? Except that in two months I won’t be up to date on TDAP which is why I asked and anyway they didn’t respond directly to what I was asking, and also what overdue pneumococcal pneumonia shot, given that I am 54 not 65 and this literally is the very first time anyone has mentioned it to me so how can it be overdue?
Look, I get that medical professionals at most levels are overworked and underpaid. Nonetheless, I do not think it’s asking too much to have their healthcare decisions explained to me, or for them to answer the actual questions I’ve asked given that I’m providing specific details and context to why I am asking.
This decent even reach the instance in between these that I forgot about until just now, where after my doctor said they were going to refer me to get a new CT scan I messaged them back saying that all I see is an appointment ticket to rheumatology, nothing for radiology, and they reply just saying that they only put the order in so it might take a few days, when the entire point was what the hell is this rheumatology referral when no one ever said anything about a rheumatology referral?
Dealing with multiple ongoing disabling conditions is difficult enough, just managing how any given day will be is difficult enough, without also feeling like all the communications labor in my healthcare decisions is on my back. It’s especially frustrating when you step back and realize that everyone should have the expectation that their doctor’s decisions be explained to them and that their actual, specific questions be answered.
Even if you’re completely healthy with no disablements or impairments, you should have these expectations, and they should be met as a matter of course.