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Comment by DoreenMichele | Hacker News Reader

I've read things that indicate they actively sweep a lot of weird stuff under the rug. I read of a case of a young boy diagnosed with cancer who spontaneously got all better for no apparent reason. Rather than investigate it, they acted like "must have been misdiagnosed."

When I began getting better when that's not supposed to be possible, my specialist scheduled me fewer appointments because "he had other patients that actually needed him." He expressed zero curiosity about how I was improving.

With shitty treatment like that and getting well on my own, when I moved, I didn't bother to get a new doctor. Internet strangers like to frame that as me being a nutter who refuses to see a doctor rather than doctors being jerks to me and me generally having no reason to see one.

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With respect, your doctor’s response seems entirely reasonable. Spontaneous remissions, as this sort of thing are called, are known to happen, but the tools to understand why and how basically don’t exist, or at best are the purview of serious biomedical laboratories; certainly, your doctor couldn’t have mounted a serious investigation with the resources in his office. Meanwhile, the sick always outnumber medical practitioners, and there’s an essentially unlimited number of people in worse condition than yours who he could help; of course he would allocate his limited time to where it would do the most good.

Of course his response was entirely reasonable.

It also has the net effect of:

A. Making me look crazy in the eyes of the world. Gee thanks.

B. Ensuring that our current mental models for various conditions are reinforced rather than questioned in a manner that furthers knowledge about how to actually get well.

Also, I have a genetic disorder. Spontaneous remission doesn't really apply in my case.

Instead, I've spent more than 18 years actively improving my health -- while reasonable people call me crazy, treat me like absolute shit, insist I'm making it up out of a sick need for attention and tell me "extraordinary claims call for extraordinary proof." which is a polite way of saying "STFU. You aren't even allowed to talk about your experiences on the internet without first having irrefutable evidence." It's a de facto social gag order. Good luck proving anything when it's essentially Verboten to even discuss it.

My comment speaks to an entire system and entire world view that actively attacks and dismisses anyone whose personal first-hand experience fails to line up with the medical "party line" so to speak.

We have been calling people "crazy" for questioning current popular medical views for a long time, a practice that effectively cost Ignaz Semmelweis his life -- even though he was a physician with studies to support his cockamamie theory that "mortality rates go down if physicians wash their hands before seeing patients."

https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis

Germ theory was later accepted and history has proven him right. Too bad, so sad for him. It doesn't bring him back from the dead.

Your experience may be 100% true and it would still not hold a lot of value for other people to hear about it. Either what you say is true and the odds of it happening are so small nobody can count on it happening to them, or what you are saying is not true and they still cannot count on it happening to them.

It is great that you survived and got the miracle cure that no doubt many people wish for, but if that story isn't one that helps or can inform other people why do they need to hear and acknowledge you? Especially given that the fact that it is medically a miracle makes it impossible to prove means that anyone else can only take it on faith. For the one miracle that happened to you, there are millions of people on the internet making huge claims that are almost definitely wrong. This isn't an environment conducive to good faith.

Then there is the frankly fairly problematic amount of anger that you express this with. It's perfectly understandable given the rest of the context that you put forth, but it makes the whole story even less palatable than it already was.

Your position that the fact that your doctor prioritised people who were actively dying means that you look crazy to everyone else is one that I can't follow, I'm afraid.

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