5 ms·

I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be

ignoramous 6y ago
I always appreciate advice (or any input, really) when it comes from someone with experience or wisdom regardless of whether they are a medical professional.
- loceng 6y ago
  Indoctrination is real when it comes to medical professions, there are major pitfalls with the current system including regulatory capture by for-profit interests, e.g. the medical industrial-institutional complex. I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.
- DoreenMichele 6y ago
  This is maybe not completely clear, but one of the issues is that if you have a serious condition, you may know more than most doctors do about the condition. I mean you may know more about it than general practitioners and you will only have some hope of learning more from a doctor if you see a specialist. So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is. And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain. It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little. So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you. There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh." So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.
  - zikzak 6y ago
    I spent years having people tell me I should eat more fibre or try to not let myself get stressed out, etc. That stopped when the lower half of my digestive system was replaced with a very obvious ostomy appliance. Now, the visible reminder of my illness makes me different enough that they know there's no really shared experience and we talk about other things. That and my increasing resemblance to Quasimodo as my joints fuse and deform, of course. Anyway, just commiserating!
  - loceng 6y ago
    This exactly. Most people, including medical professionals, don't have the time or interest to actually, really listen to you - nor enough understanding to not require going into explaining detail and patterns. They are there to fairly poorly observe, ask a set of questions based on their observations - use responses by people who are less than fully self-aware and likely don't have the best self-observation skills either, and then prescribe - but not there to learn or understand; I'm convinced this role will be replaced by adequate diagnostics and AI within the next 10 years, save the institutions, unions, etc. trying to self-protect to save their jobs if they're not willing to adapt (and not require such a high salary for what ultimately will be a technician role - and training the system and protocol will be the role of serious researchers). I do however have seemingly infinite amount of time to talk, share, and explain my story in depth if they are willing, wanting, and curious. I am in this difficult position right now regarding doctors not understanding, and behaviour and decisions not being so much critical thinking and reason based but behaviour based on indoctrinated knowledge that's skewed by the medical industrial-institutional complex: in brief, my chronic pain causes severe executive dysfunction - and only recently was I able to try a dopamine agonist which is the only medication that's helped the pain and very significantly reduce the executive dysfunction - but only starting at .5mg dose, however I have only been able to get a .25mg daily dose after trying with 5 different types of doctors - including pain management doctors - because dopamine isn't commonly used for pain, it's "somehow" slipped out of part of their practices - much like how MDMA was demonized for many decades and now MAPS.org has proven its extreme effectiveness in treating things like treatment resistant PTSD; MDMA which can't be patented, so what better way to kill competition than a drug war. Anyway, I have been struggling to see a neurologist and/or neurosurgeon - primarily as I am in Canada and the system is very slow - who apparently are the types of doctor who are less conservative when it comes to medications like dopamine agonists; used to treat people with Parkinson's for their tremors (and ~80% also have pain issues that it helps with), and also research shows dopamine helps improve executive function in people with Alzheimer's as well. The pain level and executive dysfunction level has me struggling daily however, life is very hard just waiting when I know just having a higher dose of cabergoline would greatly alleviate symptoms, so I've now initiated seeing a neurosurgeon and neurologist when I go to San Francisco for December. I'm right fucked if a neurologist or neurosurgeon won't prescribe me a higher dose - and unless a good samaritan points me to how to buy it from a black market - then come the new year I will be done trying to fight; I've looked through tor browser those sites don't seem to sell cabergoline - a little surprising as it would seemingly pair well with other sex-related enhancers that are popular, since it can aid in reducing refractory period - I guess it's just knowledge that's little known. Edit to add: I'm only "on the ball" so well this morning because I took .25mg last evening, so I have just that much more dopamine in my system helping me focus away from the pain - not be so distracted by the pain - which I only get to do once per week, the leftover of .25mg daily (1.75mg) leaving .25mg remaining of my 2mg weekly prescription; and I got two other important emails written and sent this morning, whether they lead to anything it doesn't matter - I just knew I needed to send them and I could instead of pain disrupting me from being able to put them together.

I always appreciate advice (or any input, really) when it comes from someone with experience or wisdom regardless of whether they are a medical professional.

loceng 6y ago
Indoctrination is real when it comes to medical professions, there are major pitfalls with the current system including regulatory capture by for-profit interests, e.g. the medical industrial-institutional complex. I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.
DoreenMichele 6y ago
This is maybe not completely clear, but one of the issues is that if you have a serious condition, you may know more than most doctors do about the condition. I mean you may know more about it than general practitioners and you will only have some hope of learning more from a doctor if you see a specialist. So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is. And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain. It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little. So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you. There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh." So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.
- zikzak 6y ago
  I spent years having people tell me I should eat more fibre or try to not let myself get stressed out, etc. That stopped when the lower half of my digestive system was replaced with a very obvious ostomy appliance. Now, the visible reminder of my illness makes me different enough that they know there's no really shared experience and we talk about other things. That and my increasing resemblance to Quasimodo as my joints fuse and deform, of course. Anyway, just commiserating!
- loceng 6y ago
  This exactly. Most people, including medical professionals, don't have the time or interest to actually, really listen to you - nor enough understanding to not require going into explaining detail and patterns. They are there to fairly poorly observe, ask a set of questions based on their observations - use responses by people who are less than fully self-aware and likely don't have the best self-observation skills either, and then prescribe - but not there to learn or understand; I'm convinced this role will be replaced by adequate diagnostics and AI within the next 10 years, save the institutions, unions, etc. trying to self-protect to save their jobs if they're not willing to adapt (and not require such a high salary for what ultimately will be a technician role - and training the system and protocol will be the role of serious researchers). I do however have seemingly infinite amount of time to talk, share, and explain my story in depth if they are willing, wanting, and curious. I am in this difficult position right now regarding doctors not understanding, and behaviour and decisions not being so much critical thinking and reason based but behaviour based on indoctrinated knowledge that's skewed by the medical industrial-institutional complex: in brief, my chronic pain causes severe executive dysfunction - and only recently was I able to try a dopamine agonist which is the only medication that's helped the pain and very significantly reduce the executive dysfunction - but only starting at .5mg dose, however I have only been able to get a .25mg daily dose after trying with 5 different types of doctors - including pain management doctors - because dopamine isn't commonly used for pain, it's "somehow" slipped out of part of their practices - much like how MDMA was demonized for many decades and now MAPS.org has proven its extreme effectiveness in treating things like treatment resistant PTSD; MDMA which can't be patented, so what better way to kill competition than a drug war. Anyway, I have been struggling to see a neurologist and/or neurosurgeon - primarily as I am in Canada and the system is very slow - who apparently are the types of doctor who are less conservative when it comes to medications like dopamine agonists; used to treat people with Parkinson's for their tremors (and ~80% also have pain issues that it helps with), and also research shows dopamine helps improve executive function in people with Alzheimer's as well. The pain level and executive dysfunction level has me struggling daily however, life is very hard just waiting when I know just having a higher dose of cabergoline would greatly alleviate symptoms, so I've now initiated seeing a neurosurgeon and neurologist when I go to San Francisco for December. I'm right fucked if a neurologist or neurosurgeon won't prescribe me a higher dose - and unless a good samaritan points me to how to buy it from a black market - then come the new year I will be done trying to fight; I've looked through tor browser those sites don't seem to sell cabergoline - a little surprising as it would seemingly pair well with other sex-related enhancers that are popular, since it can aid in reducing refractory period - I guess it's just knowledge that's little known. Edit to add: I'm only "on the ball" so well this morning because I took .25mg last evening, so I have just that much more dopamine in my system helping me focus away from the pain - not be so distracted by the pain - which I only get to do once per week, the leftover of .25mg daily (1.75mg) leaving .25mg remaining of my 2mg weekly prescription; and I got two other important emails written and sent this morning, whether they lead to anything it doesn't matter - I just knew I needed to send them and I could instead of pain disrupting me from being able to put them together.