I’ve been having a mysterious chronic health problem for the past several years and have learned a bunch of things that I wish I knew back when all of this started. I am thinking about how to write down what I’ve learned so others can benefit, but what’s tricky here is that while the knowledge I’ve gained seems wide-ranging, it’s also extremely specific to whatever my problems are, so I don’t know how well it generalizes to other people. I welcome suggestions on how to make my efforts more useful to others. I also welcome pointers to books/articles/posts that already discuss the stuff below in a competent way.
But anyway here is some stuff I could talk about:
Rationality lessons of mysterious health problems: certain health conditions (like mine) are quite mysterious, e.g. having no clear cause or shifting symptoms or nonspecific symptoms. This makes the health problem not only challenging on the basic suffering/emotional level, but also at an epistemic level. Some weird epistemic stuff happens when you are dealing with such a health problem, including:
Your “most likely diagnosis” will keep shifting or will have a wide distribution, which can be confusing to reason about (it’s almost as if the health problem is an agent diagonalizing against me). My “most likely diagnosis” has changed like five times.
Some mistakes I think I made trying to reason too literally about symptoms and ruled things out too early instead of just being like “ok maybe I have this thing” and then just trying the low-effort/safe interventions just to see if they help.
Weird interacting nature of symptoms: ignoring certain symptoms because they aren’t the most painful can end up being a bad idea because eliminating that symptom can help with a lot of other symptoms, because the mind/body is weird and interconnected.
I think turning to certain quacks is actually rational in the case of certain chronic illnesses. These quacks were never the first choice for the ill person, but after the conventional/established medicine’s interventions have all failed and established medicine basically shrugs and says “we don’t know what this even is”, and gives up on you, it makes sense to keep going anyway and try wackier things.
You need to do “rationality on hard mode”—when you’re stressed, when you have brain fog, when you have few productive hours in the day, when your emotions get all messed up.
There is a kind of “lawyery” thing you have to do, where you simulate the objections people will raise about things you should have done or things you should try, and you have to preempt all that and try it and be like “see? I already tried it” so that they don’t have easy outs.
How to deal with the health bureaucracy (US-specific, but what I know is even more specific): how to get the benefits you need from health providers, how to deal with insurance, how to get referrals, how to push providers with questions, optimizing which health insurance to have.
How to do health research: how to find information about symptoms, how to organize your research, how to ask good questions when meeting doctors, the importance of talking to a lot of people.
Specific things I’ve learned about different drugs, nootropics, health devices, practices, etc., and which ones seem the most promising.
General life outlook stuff:
How to orient toward “this being your new life”
How to stay motivated to live life and accomplish things while chronically ill; the hardcoreness of being ill for so long and what this does to your personality.
How to maintain a “health tracker”: how to keep track of your symptoms, what you did each day, what you ate, how you slept, etc. for future reference, and whether or not tracking any of this is useful.
Productivity hacks:
Daily goal-setting: how to get shit done even if you feel like shit every day.
The importance of having a “health buddy” who has similar health problems who you can talk to all the time, as having a chronic health problem can be very isolating (very few people can understand or support you in the way you need).
The importance of just trying lots of things to see what helps, and what this looks like in practice.
Basic health stuff that seems good to do regardless of what the cause of your symptoms is: nutrition, exercise, sleep, wackier stuff.
This all seems great honestly, I would love if there were more posts about this kind of thing. I’m especially into the rationality lessons angle (first bullet point), but the rest all seems useful too.
I’ve seen a lot of people face this situation and have to figure it out from scratch, and I don’t think much has been written about this kind of thing on LessWrong (though there is this). Sure lots has been written about it in general / not on LessWrong, but I found the vast majority of that to be extremely epistemically questionable, and/or to be really defeatist, like, “just accept that you will spend the remaining decades of your life entirely bed-ridden”.
I would say that I’d be interested in collaborating on a sequence about this, but I am already way overcommitted. But I could ask some rationalist friends who have gone through this, if you wanted collaborators.
Agreed on epistemically questionable info. I’ve seen a range of canned advice including defeatist ones.
Lynette’s post was interesting because I think I also have something like POTS, but her post is very unlike something I would write myself, and I wouldn’t have found the post useful when I was starting out (I actually probably even read the post when it first came out and probably didn’t find it useful). I am puzzled at what this means for how generalizable people’s experiences are.
And thanks, I’d be interested in introductions to potential collaborators!
I’m also dealing with chronic illness and can relate to everything you listed. I’ve been thinking that a discord server specifically for people with chronic illness in the rationality community might be helpful to make it easier for us to share notes and help each other. There are different discord servers for various conditions unaffiliated with the rationality community, but they tend to not have great epistemic standards and generally have a different approach than what I’m looking for. Do you have any interest in a discord server?
Agreed on the epistemic standards of random health groups, and yeah, I’d be interested in a Discord server. I am aware of this Facebook group, if you use Facebook, though it’s not very active.
These quacks were never the first choice for the ill person, but after the conventional/established medicine’s interventions have all failed and established medicine basically shrugs and says “we don’t know what this even is”, and gives up on you, it makes sense to keep going anyway and try wackier things.
I think this is relative to your base rates on how the world works in general. Guy that uses herbal concoctions based on some wacky theory of chakras? Sure, he may have empirically stumbled upon something that does work and just doesn’t understand why. Homeopathy or prayer? No chance, that’s just plain placebo.
I have not gotten prayer to really work for me yet, but I’ve experimented with it a bit (I feel somewhat embarrassed to admit this, but yeah I’ve gotten desperate enough and have thought I was possibly going to die on multiple occasions now and have entered mental states where I think praying might be the only thing I can do).
“Prayer” in the sense of “ask for a thing in your head and then the thing happens in real life” is obviously not going to work. But I think this may be the wrong way to think about prayers/praying (disclaimer: I am not religious at all and never was, so I have no idea what I’m talking about). Anna Salamon has an old post where she talks about “useful attempted telekinesis”, and I think this may be one valid way to make sense of praying. Repeatedly and vividly visualizing the things you value/the things you want may magically make it easier to get that thing, at least some of the time. Another way to think about it might be as a dual to gratitude journaling: in gratitude journaling you examine what you value/don’t value in terms of what you already have, whereas in prayer you examine the same things in terms of what you don’t currently have. (Why should the latter work? Shouldn’t it just lead to envy/sour grapes/bitterness about your life? Yeah, I don’t know. Anna’s post talks about useful vs harmful telekinesis and I think there’s possibly a lot to explore here.)
Praying combined with chanting + rocking may be even more effective, because the latter two have some shot at directly affecting your physiological state. I’ve not really gotten chanting to work for me, but rocking sometimes calms me down a little bit.
Homeopathy: yeah, agreed, not sure what’s going on here and hope that I don’t have to get to the point of trying it out.
I think you can formalize that kind of thing as some form of meditation or mindfulness or whatever, without involving a religious aspect that implies external entities that obviously (well… most likely. I have to leave that technically > 0% chance open) have nothing to do with it.
As for homeopathy, I feel as confident as can be that absolutely nothing is going on there other than a lot of people either deluding themselves into peddling magic potions, or straight up being con-men. The supposed “theory” behind homeopathy is one of the things that make the least sense in the long history of things that don’t make sense.
Some stuff I’ve encountered that I mostly haven’t looked much into and haven’t really tried but seem potentially useful to me: heart rate variability biofeedback training, getting sunlight at specific times of day, photobiomodulation (e.g. Vielight), red light therapy, neurofeedback, transcranial magnetic stimulation, specific supplement regimes (example), green powders like Athletic Greens, certain kinds of meditation.
I’ve been having a mysterious chronic health problem for the past several years and have learned a bunch of things that I wish I knew back when all of this started. I am thinking about how to write down what I’ve learned so others can benefit, but what’s tricky here is that while the knowledge I’ve gained seems wide-ranging, it’s also extremely specific to whatever my problems are, so I don’t know how well it generalizes to other people. I welcome suggestions on how to make my efforts more useful to others. I also welcome pointers to books/articles/posts that already discuss the stuff below in a competent way.
But anyway here is some stuff I could talk about:
Rationality lessons of mysterious health problems: certain health conditions (like mine) are quite mysterious, e.g. having no clear cause or shifting symptoms or nonspecific symptoms. This makes the health problem not only challenging on the basic suffering/emotional level, but also at an epistemic level. Some weird epistemic stuff happens when you are dealing with such a health problem, including:
Your “most likely diagnosis” will keep shifting or will have a wide distribution, which can be confusing to reason about (it’s almost as if the health problem is an agent diagonalizing against me). My “most likely diagnosis” has changed like five times.
Some mistakes I think I made trying to reason too literally about symptoms and ruled things out too early instead of just being like “ok maybe I have this thing” and then just trying the low-effort/safe interventions just to see if they help.
Weird interacting nature of symptoms: ignoring certain symptoms because they aren’t the most painful can end up being a bad idea because eliminating that symptom can help with a lot of other symptoms, because the mind/body is weird and interconnected.
I think turning to certain quacks is actually rational in the case of certain chronic illnesses. These quacks were never the first choice for the ill person, but after the conventional/established medicine’s interventions have all failed and established medicine basically shrugs and says “we don’t know what this even is”, and gives up on you, it makes sense to keep going anyway and try wackier things.
You need to do “rationality on hard mode”—when you’re stressed, when you have brain fog, when you have few productive hours in the day, when your emotions get all messed up.
There is a kind of “lawyery” thing you have to do, where you simulate the objections people will raise about things you should have done or things you should try, and you have to preempt all that and try it and be like “see? I already tried it” so that they don’t have easy outs.
How to deal with the health bureaucracy (US-specific, but what I know is even more specific): how to get the benefits you need from health providers, how to deal with insurance, how to get referrals, how to push providers with questions, optimizing which health insurance to have.
How to do health research: how to find information about symptoms, how to organize your research, how to ask good questions when meeting doctors, the importance of talking to a lot of people.
Specific things I’ve learned about different drugs, nootropics, health devices, practices, etc., and which ones seem the most promising.
General life outlook stuff:
How to orient toward “this being your new life”
How to stay motivated to live life and accomplish things while chronically ill; the hardcoreness of being ill for so long and what this does to your personality.
How to maintain a “health tracker”: how to keep track of your symptoms, what you did each day, what you ate, how you slept, etc. for future reference, and whether or not tracking any of this is useful.
Productivity hacks:
Daily goal-setting: how to get shit done even if you feel like shit every day.
The importance of having a “health buddy” who has similar health problems who you can talk to all the time, as having a chronic health problem can be very isolating (very few people can understand or support you in the way you need).
The importance of just trying lots of things to see what helps, and what this looks like in practice.
Basic health stuff that seems good to do regardless of what the cause of your symptoms is: nutrition, exercise, sleep, wackier stuff.
Yes. I have something like me cfs and all you said resonate well.
This all seems great honestly, I would love if there were more posts about this kind of thing. I’m especially into the rationality lessons angle (first bullet point), but the rest all seems useful too.
I’ve seen a lot of people face this situation and have to figure it out from scratch, and I don’t think much has been written about this kind of thing on LessWrong (though there is this). Sure lots has been written about it in general / not on LessWrong, but I found the vast majority of that to be extremely epistemically questionable, and/or to be really defeatist, like, “just accept that you will spend the remaining decades of your life entirely bed-ridden”.
I would say that I’d be interested in collaborating on a sequence about this, but I am already way overcommitted. But I could ask some rationalist friends who have gone through this, if you wanted collaborators.
Agreed on epistemically questionable info. I’ve seen a range of canned advice including defeatist ones.
Lynette’s post was interesting because I think I also have something like POTS, but her post is very unlike something I would write myself, and I wouldn’t have found the post useful when I was starting out (I actually probably even read the post when it first came out and probably didn’t find it useful). I am puzzled at what this means for how generalizable people’s experiences are.
And thanks, I’d be interested in introductions to potential collaborators!
I’m also dealing with chronic illness and can relate to everything you listed. I’ve been thinking that a discord server specifically for people with chronic illness in the rationality community might be helpful to make it easier for us to share notes and help each other. There are different discord servers for various conditions unaffiliated with the rationality community, but they tend to not have great epistemic standards and generally have a different approach than what I’m looking for. Do you have any interest in a discord server?
Agreed on the epistemic standards of random health groups, and yeah, I’d be interested in a Discord server. I am aware of this Facebook group, if you use Facebook, though it’s not very active.
Somewhat related, though different in various ways, is this post by Bryan Caplan: https://www.econlib.org/the-cause-of-what-i-feel-is-what-i-do-how-i-eliminate-pain/
I think this is relative to your base rates on how the world works in general. Guy that uses herbal concoctions based on some wacky theory of chakras? Sure, he may have empirically stumbled upon something that does work and just doesn’t understand why. Homeopathy or prayer? No chance, that’s just plain placebo.
I have not gotten prayer to really work for me yet, but I’ve experimented with it a bit (I feel somewhat embarrassed to admit this, but yeah I’ve gotten desperate enough and have thought I was possibly going to die on multiple occasions now and have entered mental states where I think praying might be the only thing I can do).
“Prayer” in the sense of “ask for a thing in your head and then the thing happens in real life” is obviously not going to work. But I think this may be the wrong way to think about prayers/praying (disclaimer: I am not religious at all and never was, so I have no idea what I’m talking about). Anna Salamon has an old post where she talks about “useful attempted telekinesis”, and I think this may be one valid way to make sense of praying. Repeatedly and vividly visualizing the things you value/the things you want may magically make it easier to get that thing, at least some of the time. Another way to think about it might be as a dual to gratitude journaling: in gratitude journaling you examine what you value/don’t value in terms of what you already have, whereas in prayer you examine the same things in terms of what you don’t currently have. (Why should the latter work? Shouldn’t it just lead to envy/sour grapes/bitterness about your life? Yeah, I don’t know. Anna’s post talks about useful vs harmful telekinesis and I think there’s possibly a lot to explore here.)
Praying combined with chanting + rocking may be even more effective, because the latter two have some shot at directly affecting your physiological state. I’ve not really gotten chanting to work for me, but rocking sometimes calms me down a little bit.
Homeopathy: yeah, agreed, not sure what’s going on here and hope that I don’t have to get to the point of trying it out.
I think you can formalize that kind of thing as some form of meditation or mindfulness or whatever, without involving a religious aspect that implies external entities that obviously (well… most likely. I have to leave that technically > 0% chance open) have nothing to do with it.
As for homeopathy, I feel as confident as can be that absolutely nothing is going on there other than a lot of people either deluding themselves into peddling magic potions, or straight up being con-men. The supposed “theory” behind homeopathy is one of the things that make the least sense in the long history of things that don’t make sense.
I’ve written up a few things on Reddit recently:
Things I’ve tried with my breathing difficulty, including some things that helped quite a bit
Things I’ve tried with my swallowing difficulty. This one I have not figured out how to improve reliably at all, so it’s mostly asking people for help.
mind elaborating?
Some stuff I’ve encountered that I mostly haven’t looked much into and haven’t really tried but seem potentially useful to me: heart rate variability biofeedback training, getting sunlight at specific times of day, photobiomodulation (e.g. Vielight), red light therapy, neurofeedback, transcranial magnetic stimulation, specific supplement regimes (example), green powders like Athletic Greens, certain kinds of meditation.