2 ms·
You want a more recent example: I give you me. I was diagnosed with Atypical Cystic Fibrosis at age 35. It is genetic, thus incurable. Having managed my condit
by Mz 10y ago
You want a more recent example: I give you me.
I was diagnosed with Atypical Cystic Fibrosis at age 35. It is genetic, thus incurable. Having managed my condition without a diagnosis for decades, I had my own ideas about what was going on with my body, different from the current scientific consensus.
Armed with a proper diagnosis, I began to get myself well. My CF doctor's response was to express zero curiosity and schedule me fewer appointments because "other patients needed him and I did not."
I have been shit on left and right on multiple internet forums for trying to talk about my experiences. I have been called a quack and accused of being mentally ill and had uglier personal attacks made against me. I have had "sciency" people tell me that "13 years of consistent forward progress is a wild coincidence, stranger things have happened, it isn't evidence that you know anything."
No one has yet locked me up in an insane asylum or beaten me to death, but I have absolutely experienced firsthand that this has not really changed. I am currently homeless, which I guess is a slightly better fate than being essentially murdered for trying to share new information, but the way I get treated doesn't speak well of society at large.