7 ms·

Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What work

Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.

PragmaticPulp 4y ago
They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results. Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe. Be careful out there.
- aksss 4y ago
  This is my experience. They can be good emotional support resources but often develop an orthodoxy unsupported by science and enforced through shaming/berating (e.g. people with lupus shouldn’t drink orange juice or supplement with vitamin C, and similar nonsense). My advice is read all you can to thoroughly understand what’s happening to you - The Lupus Book by Dr. Wallace, The Lupus Encyclopedia by Dr. Thomas are two great compendiums and candidates for Kindle. Then find support resources that look at the condition as something that can be and should be managed, eschewing the mesmerizing appeal of self-pity and one-upsmanship with symptoms. The fact is that managing lupus puts a higher priority than normies have on diet, fitness, sleep, mental and physical stress management, and UV exposure. Ordering your own blood work - understanding the tests that are valuable and how to diagnose results is also a good practice for taking charge of your condition - i.e. what are the early warning signs that my kidneys may be “silently” failing; what are my baseline CBC numbers, specifically white blood cells, and can I provide those to a GP/PCP on the fly; etc. Social media, I found, doesn’t really advance what is mostly a solo journey to preserve function through daily mental and physical discipline. However, another thing I’ve come to appreciate is that most (healthy) people don’t enjoy listening to stories about medical problems, and if you just need to tell your story and get some brief positivity and empathy, online groups can fill that need.
- treeman79 4y ago
  Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety. Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions. People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay
  - H_Pylori 4y ago
  - deleted 4y ago
    [deleted]
- avgDev 4y ago
  I am hoping to actually produce software that helps patients navigate autoimmune issues and neuropathies. I had a reaction to a drug that mimicked many diseases and had to go down the rabbit hole myself and find reliable sources of information for many things. I also found that doctors are just awful, they don't have enough time to hear about 10+ symptoms that may be common with complex autoimmune or neurological issues. I never received proper referral. I have been to Mayo clinic, which was close to proper diagnosis but decided against blaming the drug. As far as reddit and facebook being a huge source of misinformation, I have to disagree. Some groups are awful. However, the SFN subreddit has great document written by a frustrated physician. Many autoimmune groups link to research papers and non-profit organizations which provide databases of doctors interested in treating particular issues. One just needs to understand that some commenters are just average people who may or may not be well informed on the subject. However, the wikis and documents on those support groups are generally fantastic.
JTbane 4y ago
Sounds like a great place for hypochondriacs to hang out.
- treeman79 4y ago
  This is a very hateful stance.
  - aksss 4y ago
    Being critical is not being hateful. The fact is that a lot of online support groups get a weird mix of people - people who actually have the clinical diagnosis, people who feel they may be on the road to a diagnosis, people that want to imagine they would get the diagnosis, people who can't get the diagnosis but figure the system is aligned against them for whatever reason, friends/relatives of people with the diagnosis, etc. I always find it weird that some people "want" to have a chronic medical condition or be perceived as one who does - and I've met them. Hypochondriacs show up, that's a fact, Jack.
- cameronh90 4y ago
  You're not wrong, but why are they exhibiting hypochondria? These sorts of disorders are complex and multifaceted. Yes, many people on these subreddits are hypochondriacs, by definition, but you can find them coalescing there, buying placebos, going to chiropractors, functional medicine doctors, naturopaths and reading sketchy journals because they've been told they're fine by doctors. However, it's blatantly obvious they are not fine, because if they were fine, they wouldn't be experiencing those symptoms. They may not be ill in the way they think they are, but they are not well. Doctors are too ready to write off patients as worried well, but sometimes it turns out those symptoms are due to a real physical issue, and it can take years of fighting the system to find a solution. We're increasingly seeing that autoimmune, neurological, gastrointestinal, hormonal and other types of issues can cause issues across the whole body as well as directly triggering psychological disorders. Often these disorders are not even known to GPs who haven't kept up to date since leaving medical school. A patient with no history of mental health issues presents with sudden health anxiety and panic disorder out of nowhere, is it a primary mental health disorder or is there another underlying issue (psychological or physical) that's brought it on? You can't know unless you take their complaint seriously and properly investigate, but doctors are under time pressure and keen to just write it off as anxiety disorder and stick the patient on the antidepressant treadmill. Other times, it is purely psychological or somatic, but so what? Mind and body health are intimately tied together. When one starts to deteriorate, the other often follows. Take some Zoloft and go for a walk may be a quick and convenient answer, it may even work a lot of the time, but evidently there are many, many people who find it unhelpful. Rather than looking at alternatives, some doctors will just try and say the same things over and over until the patient gives up. Then we wonder why people give up on modern, science-based healthcare and get roped into less scientific disciplines. Modern medicine is one of the greatest achievements of human civilization, but many doctors seem to have forgotten that you're treating the patient, not the disease.

PragmaticPulp 4y ago

They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results. Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe. Be careful out there.

aksss 4y ago
This is my experience. They can be good emotional support resources but often develop an orthodoxy unsupported by science and enforced through shaming/berating (e.g. people with lupus shouldn’t drink orange juice or supplement with vitamin C, and similar nonsense). My advice is read all you can to thoroughly understand what’s happening to you - The Lupus Book by Dr. Wallace, The Lupus Encyclopedia by Dr. Thomas are two great compendiums and candidates for Kindle. Then find support resources that look at the condition as something that can be and should be managed, eschewing the mesmerizing appeal of self-pity and one-upsmanship with symptoms. The fact is that managing lupus puts a higher priority than normies have on diet, fitness, sleep, mental and physical stress management, and UV exposure. Ordering your own blood work - understanding the tests that are valuable and how to diagnose results is also a good practice for taking charge of your condition - i.e. what are the early warning signs that my kidneys may be “silently” failing; what are my baseline CBC numbers, specifically white blood cells, and can I provide those to a GP/PCP on the fly; etc. Social media, I found, doesn’t really advance what is mostly a solo journey to preserve function through daily mental and physical discipline. However, another thing I’ve come to appreciate is that most (healthy) people don’t enjoy listening to stories about medical problems, and if you just need to tell your story and get some brief positivity and empathy, online groups can fill that need.
treeman79 4y ago
Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety. Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions. People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay
- H_Pylori 4y ago
- deleted 4y ago
  [deleted]
avgDev 4y ago
I am hoping to actually produce software that helps patients navigate autoimmune issues and neuropathies. I had a reaction to a drug that mimicked many diseases and had to go down the rabbit hole myself and find reliable sources of information for many things. I also found that doctors are just awful, they don't have enough time to hear about 10+ symptoms that may be common with complex autoimmune or neurological issues. I never received proper referral. I have been to Mayo clinic, which was close to proper diagnosis but decided against blaming the drug. As far as reddit and facebook being a huge source of misinformation, I have to disagree. Some groups are awful. However, the SFN subreddit has great document written by a frustrated physician. Many autoimmune groups link to research papers and non-profit organizations which provide databases of doctors interested in treating particular issues. One just needs to understand that some commenters are just average people who may or may not be well informed on the subject. However, the wikis and documents on those support groups are generally fantastic.

JTbane 4y ago

Sounds like a great place for hypochondriacs to hang out.

treeman79 4y ago
This is a very hateful stance.
- aksss 4y ago
  Being critical is not being hateful. The fact is that a lot of online support groups get a weird mix of people - people who actually have the clinical diagnosis, people who feel they may be on the road to a diagnosis, people that want to imagine they would get the diagnosis, people who can't get the diagnosis but figure the system is aligned against them for whatever reason, friends/relatives of people with the diagnosis, etc. I always find it weird that some people "want" to have a chronic medical condition or be perceived as one who does - and I've met them. Hypochondriacs show up, that's a fact, Jack.
cameronh90 4y ago
You're not wrong, but why are they exhibiting hypochondria? These sorts of disorders are complex and multifaceted. Yes, many people on these subreddits are hypochondriacs, by definition, but you can find them coalescing there, buying placebos, going to chiropractors, functional medicine doctors, naturopaths and reading sketchy journals because they've been told they're fine by doctors. However, it's blatantly obvious they are not fine, because if they were fine, they wouldn't be experiencing those symptoms. They may not be ill in the way they think they are, but they are not well. Doctors are too ready to write off patients as worried well, but sometimes it turns out those symptoms are due to a real physical issue, and it can take years of fighting the system to find a solution. We're increasingly seeing that autoimmune, neurological, gastrointestinal, hormonal and other types of issues can cause issues across the whole body as well as directly triggering psychological disorders. Often these disorders are not even known to GPs who haven't kept up to date since leaving medical school. A patient with no history of mental health issues presents with sudden health anxiety and panic disorder out of nowhere, is it a primary mental health disorder or is there another underlying issue (psychological or physical) that's brought it on? You can't know unless you take their complaint seriously and properly investigate, but doctors are under time pressure and keen to just write it off as anxiety disorder and stick the patient on the antidepressant treadmill. Other times, it is purely psychological or somatic, but so what? Mind and body health are intimately tied together. When one starts to deteriorate, the other often follows. Take some Zoloft and go for a walk may be a quick and convenient answer, it may even work a lot of the time, but evidently there are many, many people who find it unhelpful. Rather than looking at alternatives, some doctors will just try and say the same things over and over until the patient gives up. Then we wonder why people give up on modern, science-based healthcare and get roped into less scientific disciplines. Modern medicine is one of the greatest achievements of human civilization, but many doctors seem to have forgotten that you're treating the patient, not the disease.