Oh dear Lord, I can relate. Before I became too ill to work in any meaningful sense, I was in education. Student teachers in the U.S. literally pay for the privilege of going to work. Supposedly you're paying a mentor teacher and a university advisor for the burden of coaching you, but in my case my mentor teacher had a family crisis that took her out of the classroom for most of the semester. Since student teachers can't legally be in charge of a classroom, the school brought in a sub who'd had his teaching certificate for less than a year, and who did not assist me in any way. Talk about the blind leading the blind. I still had to pay to go to work every day, though.
You'd think that by this point I'd have woken up and smelled the doom, which I kind of did, but I felt obligated to give it the old college try anyway. Among other reasons, my family expected me to. Most of my relatives are very high-functioning people. I don't even say that with bitterness. U.S. laws and culture tend to incentivize being irresponsible bastards (think of our oil companies tainting aquifers with fracking wastewater, Wall St.'s predatory lending practices throwing the whole world into recession, and the private prison industry exploiting the loophole in our anti-slavery amendment, etc.), but my fam are about as decent as it's possible to be while still participating in this kind of society. I really stand out as the useless NEET who can't do anything. My relatives don't even have contempt for me, just a puzzled sadness.
I also totally understand chronic illness and relentless pain. I have this genetic shitstorm common in my mother's family, for one thing. It used to be labeled malingering or hypochondria, and frequently still is among doctors who aren't specialists in one of the affected areas. What are the odds that God, or chance, or both, would kick the same person in the teeth in so many apparently-unrelated ways?
Now at least docs who focus particularly on the less-common autoimmune problems, or genetic abnormalities, or some kinds of GI or endocrine problems, have seen enough patients suffering from similar shitstorms to know the condition exists. It has at least one proposed name now. "The language is that of Mordor, which I will not utter here." (Thanks, Gandalf.) Actually I don't want to tie myself back to the docs studying it, because that could be personally identifying. Let's just call it "You're Fucked Disease." YFD for short.
All the doctors who regularly encounter YFD, both those who give it a name and those who don't, agree that there is no cure and that its course is ultimately degenerative. Treatment goals, such as they are, consist of making rather major and burdensome lifestyle changes with the goal of slowing a patient's descent into incapacitation.
It is pr
Oh dear Lord, I can relate. Before I became too ill to work in any meaningful sense, I was in education. Student teachers in the U.S. literally pay for the privilege of going to work. Supposedly you're paying a mentor teacher and a university advisor for the burden of coaching you, but in my case my mentor teacher had a family crisis that took her out of the classroom for most of the semester. Since student teachers can't legally be in charge of a classroom, the school brought in a sub who'd had his teaching certificate for less than a year, and who did not assist me in any way. Talk about the blind leading the blind. I still had to pay to go to work every day, though.
You'd think that by this point I'd have woken up and smelled the doom, which I kind of did, but I felt obligated to give it the old college try anyway. Among other reasons, my family expected me to. Most of my relatives are very high-functioning people. I don't even say that with bitterness. U.S. laws and culture tend to incentivize being irresponsible bastards (think of our oil companies tainting aquifers with fracking wastewater, Wall St.'s predatory lending practices throwing the whole world into recession, and the private prison industry exploiting the loophole in our anti-slavery amendment, etc.), but my fam are about as decent as it's possible to be while still participating in this kind of society. I really stand out as the useless NEET who can't do anything. My relatives don't even have contempt for me, just a puzzled sadness.
I also totally understand chronic illness and relentless pain. I have this genetic shitstorm common in my mother's family, for one thing. It used to be labeled malingering or hypochondria, and frequently still is among doctors who aren't specialists in one of the affected areas. What are the odds that God, or chance, or both, would kick the same person in the teeth in so many apparently-unrelated ways?
Now at least docs who focus particularly on the less-common autoimmune problems, or genetic abnormalities, or some kinds of GI or endocrine problems, have seen enough patients suffering from similar shitstorms to know the condition exists. It has at least one proposed name now. "The language is that of Mordor, which I will not utter here." (Thanks, Gandalf.) Actually I don't want to tie myself back to the docs studying it, because that could be personally identifying. Let's just call it "You're Fucked Disease." YFD for short.
All the doctors who regularly encounter YFD, both those who give it a name and those who don't, agree that there is no cure and that its course is ultimately degenerative. Treatment goals, such as they are, consist of making rather major and burdensome lifestyle changes with the goal of slowing a patient's descent into incapacitation. At least that's how things stood pre-covid. I've had that damn disease twice now, and while it obviously hasn't killed me, it's been like taking a cannonball to the face. My symptoms get a lot worse very fast, and thus far the loss of function has been permanent.
It is precisely because I have a large, sympathetic, and moneyed family that I have the option to stay alive much longer at all. If I didn't have such resources available, a used or ch12 gauge and some 00
