For those who have friends, family, or other loved ones looking for how best to support those with TN, and also one another, a helpful resource is “Trigeminal Neuralgia Caretakers” group on facebook. As someone who is deeply concerned for a loved one in my life with TN, this has been a huge help fo rme.
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Hey Sean1, it’s great to see you posting again! And thanks for the tip about that Facebook site. We know that there are a lot of TN caretaker issues “out there”. We are here to support you/them too, and we have quite a lot of caretakers on this forum, if you do a quick “magnifying glass” search using the keyword “caretaker”.
If it would be helpful, we can set up a Caretaker category for you and the others. Please let us know. Meanwhile, I’m going to respond to your post with a more-or-less standard caution that we give whenever someone recommends a Facebook group.
While we don’t mind people mentioning other support groups, we are very protective of our members’ privacy and we don’t want anybody to risk the privacy of their medical information as a result of a recommendation they read here. I’d like to add a couple of caveats to your post:
A caution about participating in “Private” Facebook groups:
Facebook, even its “private” groups, leaks like a proverbial sieve. You usually post under your real name, which means that you are only one cut-and-paste away from having someone breech your privacy, tell one of your friends, or inform government/insurers etc of what you have said.
And here’s the bottom line: that Facebook wants your data. Facebook wants all the consumer, medical, and personal information that it can get its electronic hands on. I don’t know about you, but I’m very suspicious of that.
That’s why we strongly discourage our members from putting themselves at that kind of risk with medical information, and so we strongly discourage recommendations to groups such as Facebook. I can’t stress this strongly enough.
That said, we don’t mind someone mentioning that they are on a FB group. But we actively discourage strong recommendations, for the protection of our members’ privacy.
On the positive side, things to keep in mind:
- Unlike Facebook, this community encourages people to be anonymous with their screen name and even with their location. Even though your posts here are public, your name is not. You are in control of your screen name, and your location.
- Other members of the group cannot identify you and expose your identity.
- Our conversations are threaded, and the vast amount of real-life information from real vetted patients here can be searched, something that isn’t possible on Facebook. Our search engine works really well.
Other than those points to remember, thanks for your really helpful participation! It’s members like you, and the excellent moderators here, that make this community safe, strong and supportive.
All the best to you
Seenie from the ModSupport team.
My goal is to get folks access to as much help as they can get. Hopefully we are all trying to do the same.
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Looking into it! Thank you, Sean1.