I’m currently a medical student and a licensed EMT with a chunk of professional experience in medicine as well as having multiple chronic illnesses, a couple of which are very stigmatized. I’ve kind of settled into conducting my appointments like I’m presenting a patient to an attending physician. I still use I/me/my/mine and describe things from my perspective, but it’s still a rather…professional(?) discussion. I feel like it helps me approach the conversation in a productive way, and my physicians seem pretty receptive to my suggestions for treatment and testing…but it also feels like I’m dehumanizing myself a bit.
The biggest issue I’ve had tends to be with nurses/NPs/admin/etc when I call and say “hey, I’m having these weird symptoms and I think this is the diagnosis, can you get me in to see the physician?” and they sort of short-circuit almost because they seem to be in the habit of exerting their own judgement about a situation.
I recently had a nurse try to punt me back to my primary care physician because the specialist was out of the office and she wouldn’t escalate to the physician on-call because she didn’t understand that I had already talked to my primary care physician and she said she wasn’t equipped to deal with it. (This was an issue that has the potential to be life-threatening in a matter of days that, fortunately, I knew how to kinda sorta manage on my own for a little bit.)
I’m not a medical professional, but I’ve got a few in the family and my own experience to go on.
Medical professionals do not seem to respond well to self-diagnosis. I’d stop at the list of symptoms, and then see what they say. If they point in a different direction be ready to hear it, but at that point I’d maybe say something like, “Hmm, Y could be it. I’ve wondered if it might be X, do you think that’s possible?” By asking a question instead of telling them, you’re framing things as them as the expert rather than you being adversarial, or preempting their work.
It’s a bit silly, but as a professional in a different field it is absolutely infuriating how people with one hour of amateur Googling will toe-to-toe with me with years of intensive study. I’m not saying you’re wrong, just some point ego kicks in for just about anybody. Let them be the expert.
I suspect you already know this, but DO NOT ask for particular medications. That’s something people with “drug seeking behavior” do. Ask if there is something that might help. If it’s not what you want, then, “I’ve tried that before and I didn’t find it helped. It’s there something else?” Maybe then you could say something like, “is a ketamine infusion an option?”
As for the clerks at the desk … err on the side of not telling them much, i.e. “I’ve got these three symptoms and I’m really concerned. If this goes on for X more days, I’m going to be in a bad place. Dr. Familyphysician said she wanted me to see Dr. Specialist as soon as possible.” They’re professional gate keepers. Allow them to feel important for helping you. Don’t give them any reason to shut the gate on you. It’s their only real agency. Don’t give them a reason to use it.
Be conscious that there are a lot of problematic patients. A lot. DON’T look like one.
Honestly. I’ve found nearly every medical professional hates when you know more than them about your disease. In my experience it sort of makes them treat you worse. So I tend to try and steer things into the way I want them without being explicit if you know what I mean.
Say I want to try low dose naltrexone (which is a cheap non-patented drug, that has minimal side effects and may help a few autoimmune diseases, research is mixed, and since there’s no patent no one is bothering to actually conduct large trials).
Instead of asking if I can try the drug. I’ll ask the doctor if they’ve heard of it, what they think of it. Then say I have the kind of symptoms the drug helps. I guide them towards what I want instead of saying it explicitly. Because for some reason, saying it explicitly seems to raise red flags and you never get what you want.
But yeah I have a stigmatised disease that was psychologised for decades and doctors treat you horribly in general when you have it so maybe I need to resort to measures that others might not need to.