It really bugs me that the only reason it has taken me so long to get diagnosed is merely because doctors refused to test.
In reality, we could know all the things in three months, give or take.
But instead it's taken decades.
Did you know? My body had physical deformities in my 30s from the liver tumors. It was pronounced enough that doctors would comment, but never test. We all just assumed it was from being fat (note: for those who've forgotten, I'm just overweight. We're not talking about morbid obesity that obliterates all my anatomical landmarks and makes it impossible to see if something's off<--that's how strong fat bias is though. It ignores data and logic. Even I bought it.).
I'm sorry, but doctors are terrible gatekeepers. I get that I'm rare, but what I have was never difficult to diagnose. This isn't unknowable. All the science exists. Someone just had to do it. No one wanted to though. They wanted to tell me it was because I was fat. I heard that for years. Then they didn't like that I read studies or had questions or, or, or.
Once the tumors appeared, things should have kicked into high gear, but they didn't. I got more obstruction. More shitty doctors in the throes of some warped God Complex. Dysfunctional administrative systems that couldn't make appointments or set up testing.
I would've gotten better service calling a funeral home. Maybe that was the goal.
Sometimes I wonder how many patients die or suffer permanent harm because their issue didn't give them the time I had to spend a month going to doctor after doctor trying to get diagnosed.
Sometimes I wonder how many doctors can even see that their system was trying to kill me?
Perhaps you're thinking 'don't be hysterical' but there's a point where this shit isn't a mistake, it's by design. I ran large, complex systems where failure was life or death. I didn't fuck up this badly and I was just as understaffed as any nursing shift. At some point, the lack of investment, the lack of improvement...it's on purpose and we are either enabling it or dismantling it. Most seem to opt for enabling.
The shit care is systemic. On many levels. There's resource scarcity. There aren't enough staff, largely by design, and the decision makers higher up in the system treat care providers like shit which makes staffing problems worse as people leave or opt to not even start. Patients are pissy and difficult because shit rolls downhill.
But more importantly, we don't actually have the capacity to do all the MRIs and testing that we really should, so it's rationed. The rationing is obscured by a variety of excuses, disguised as scientific fact, and passed on via formal instruction that doctors don't question. It becomes culture.
Insurance companies are trying to control their costs. So, on their end, they limit access and inject all kind of bizarre decision trees into medicine as well as throw up road blocks to keep patients at bay.
Pharmaceutical companies are trying to maximize profits so they also inject all kinds of bizarre decision trees and propaganda into medicine.
You have misogyny and racism and fat bias and Google bias (i.e. don't confuse your google search with my medical degree). I will also say, being quite tall and just inherently big (I'm more linebacker than ballet dancer in build) plus, also being a woman is NOT helpful. I dealt with this a lot in my corporate days--it's not just medicine obv--and I referred to it as 'oops, I forgot to have a penis.'
It all conspires to keep people sick.
Deny, deflect, deride, delay, dismiss, die. That is the mantra of modern medicine.
I know on paper, it's cheaper if I die. It's cheaper if I don't have any testing, and either get better on my own, or die without any intervention. It seems like the math is there are enough people who get better or die that the ones who fall in the middle and cost a lot of money are still saving the system money. But their math is funky. Things have changed. It seems like the paradigms are old and antiquated.
For example. We know that, in the case of hyperaldosteronism, testing is way cheaper than not testing. It's utterly bizarre why we don't screen for that proactively. There's some data that suggests as much as 50% of those with hypertension have hyperaldosteronism. That's like, 50 million people we are choosing to let accrue expensive, resource heavy damage and eventually die.
I'm not talking about surgery here. Just blood tests and imaging. All very low risk things. We can know better and do better. This is possible.
No one seems to wonder about what makes it impossible.
When is medicine going to change? Because everything's in place. We have all the science. Pick it up and use it already. This doesn't need to take decades. We can fly so why are we crawling backwards all the time?
It's time for medicine's mantra to be test, image, identify, treat, heal, LIVE.
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