I Facebook for support forums for autoimmune conditions.
It is drastically better then Reddit for finding answers or suggestions.
Every question gets dozens of answers many of which are very insightful and useful if repetitive.
The sort of stuff that doctors don’t like to explain like my bloodwork says this what does that mean and what should I do next.
people will have excellent answers.
Reddit used to be really great for this type of community when subreddits could customize stuff and even have a dedicated Wiki. It's really gone the opposite direction in the last few years. They still can have these things but the tools are literally 10+ years behind.
Because I spent years researching my conditions. A lot of people on the forums have as well. Plus some treatments show up again and again as “this worked for me”
For example I was getting up 10x a night to pee for years. Kept seeing post to try aloe Vera freeze dried pills. $$$
Finally tried it. And I slept through the night now.
Understanding test is another one.
A crap ton of doctors will see a negative test and automatically declare you don’t have X condition even if you have every single symptom. Eventually you learned that a large percentage usually get negatives on that test. That there are alternate test that can be run.
But most doctors aren’t even aware they exist.
Oh so a lot of the moral and legal support. Imagine having the flu for 30 years And trying to live a normal life. Everyone calling you lazy and a whiner and if you try and do something about it you get labeled as a hypochondriac and it all being dismissed as anxiety. Some diseases take on average seven years or more to get diagnosed because because of these problems; mine took 20 years.
I'm not in any Facebook groups but as a general principle it's a lot easier to verify a true claim than it is to come up with a true claim from nothing.
Every question gets dozens of answers many of which are very insightful and useful if repetitive.
The sort of stuff that doctors don’t like to explain like my bloodwork says this what does that mean and what should I do next. people will have excellent answers.