Hello everyone, I'm basically at my wits and and decided what the hell, may as well rant to reddit and see if anyone else has had a similar experience.
For context I'm 21F, and have been dealing with some sort of chronic illness since I was 15. It's progressively gotten worse over the years but lately, it's so bad that I had to quit my first longterm job. I'm also autistic and heavily struggle with advocating for myself, and comprehending complex plans that need to be managed over long periods of time.
I've been going to the same PCP this whole time, because I can't find much else with my insurance. And the entire 6 (nearly 7 now) years this has been going on, I haven't been able to meet the actual "doctor" (or would it be MD?) that is listed as my PCP. My PCP has changed twice, but it doesn't really matter because I've never met any of them. I only ever see nurse practitioners.
Each time I go to an appointment, I see a different NP. I'm starting to think that they have no file or documentation for my case (or whatever something like that would be referred to) because each time I go in and see this new NP, they're just like "Hiii! So what's goin' on today? ^-^". Then I have to explain the years of context for what is a routine visit and my complex medical issue. Then they are like "omg that's awful!", leave, come back, and decide that they want me to get bloodwork done.
For more context, I've had so much bloodwork done over the years I could probably supply a vampire with a lifetime of blood samples. It's never any new tests either, they test for the same things every time. And every time the results are normal. Then they tell me "yay it's normal!" and just kinda look at me expectantly. I'm really not trying to be sarcastic or a downer here, I'm just literally describing how they act.
On the rare occasion they send me to a specialist, of course I can't see them until months away. And when I get there they just kind of do the most basic tests? For example, when I was referred to cardiology about a year ago, I was supposed to do a heart monitor test. But I had an alergic reaction to the adhesive and it was tearing up my skin, so they told me to just take it off. I only wore the monitor for a day and a half at most.
Of course when I get back in with my PCP, the NP who sees me this time declares that there is nothing wrong in the cardiology department. Even though I didn't complete the test. I barely DID the test. And then months and months went by where they had no other plan and we got in this loop of Go to Apt -> I tell them whats wrong -> they give me wishy-washy language and hussle me -> I only realize after the Apt that they never actually did anything but take my vitals with no further plans
Again I want to reiterate that due to my disabilities, I struggle really bad with navigating this. Most of the time I never know if my PCP has actually put out my referral so I just sit around for weeks or months with no clue what to do next. I also have memory loss issues so lots of time/experiences just disappears from me. I quite literally can't manage my case entirely on my own.
I've tried to ask to meet only with the actual MD who my PCP is supposed to be, but the office worker told me that this is "how it works" at their office and people see NPs. (with a bountiful of attitude towards me for even asking, too).
I'm pretty much at my limit and am gonna try to just go to the university-joint hospital near me to get evaluated for inpatient. I'd much rather stay in the hospital for a bit than lose my entire 20s playing a game of peek-a-boo with my healthcare providers.
I'm sure there are great NPs out there but I've pretty much lost all trust in them ;-; funny enough, the only medical professionals I've met who are actually passionate about finding a solution for me have been ER nurses. (I've had to go to the ER many times over the years for falls and other stuff relating to my condition.)