3 ms·

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

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.

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.