I’m VERY new to the Chiari community but I am finding such anger and hostility on many Facebook groups and other groups. NOT from this group though. I understand that most people feel misunderstood and mistreated by the medical community but you would think there would be more empathy towards fellow Chiarians. I am a nurse so I may see things somewhat differently, but I was wandering if others have experienced this on other boards and groups? It’s almost like a “know it all” mentality and nothing anyone else says is right including the doctors. And if you ever have a success story no one is happy for you and says its only temporary. Maybe I’m just “new” and don’t get it yet but it makes me want to stay away. Again his group has been great and I think that may be because it seems small.
I agree, it seems like many are very angry. Some of the groups will attack someone just because their decompression surgery was a success and they had no issues after. I get that is somewhat rare, but they should be happy for those people.
Thank you for the compliment on our group. I understand your feelings and the others expressed by other commenters. I believe we are a special group because we provide what many try to, a place to be honest with each other but also honest with ourselves with pressure. We are definitely misunderstood hopefully one day that will change.
Please don't judge all by a very few groups of people. If it's true that Chiari is as numerously populated as the MS community; you have to expect there are a few people who are louder than others & angry. I get it; it's disheartening to be ignored, or worse, misdiagnosed by the very medical people we look to for help, but, they are humans, not gods. Until the tests and research are better documented, we patients will have to be...well...patient.
Since I'm still new at this myself...and more than a little weary at the process...maybe, I'm more grounded in the feelings of being patient...after all, I don't want to be someone's experiment in diagnosing or treating me.
Help, asked for & given by people here is welcome...some of those other boards are so into giving "medical" advise, that it's more than a little scary. The good thing is, you can always choose to leave them.