Sunday, May 12, 2013


Okay, I'm totally making up for not posting yesterday.

I have been storing up this rant about Survivor Groups.  I am a member of (though not an active participant in) a Brain Aneurysm Survivors group on Facebook.   I joined when it was an open group, ostensibly for people who had been through the experience to share their experience with the outside world. I don't think I posted more than an intro post, and then I forgot about it. It seemed to be mostly a group of people celebrating their "annie-versaries" (which still provokes a groan) and occasionally asking sincere questions about recovery issues.  But eventually it dropped off my feed, until they announced they were closing the group to outsiders.  I didn't opt out, because, whatever.

It appears to have morphed into a closed circle of people talking about how nobody understands what they've been through!  And while I do certainly know how lucky I was to survive without serious deficits, I'm reading the Drama and want to reach into the monitor and slap some of these people who also don't have serious deficits.  Is your memory not what it once was?  Carry a notebook. Write shit down until remembering comes back.  Listen to your doctors.  Stop fretting and live.  You are okay! You Are LUCKY!  Go Forth and LIVE!   Our Vice President is a survivor!  Bret Michaels, Mario Batali, and yours truly - we all have done that brain thang.  Scary shit.  Very serious shit. But if you curl up into a ball and fret over what scary shit you've been through, you'll never get up and live again. 

Okay, there is some real value in a gripe group of people who have been there, because this IS a fairly small in-group.  But without a strong leader directing things in a positive direction, it took no time at all for it to degenerate into a whine festival. 

Internet support groups - there are some really good ones, and then, there is Facebook.  Choose your Internet Support with caution. 


jen said...

Well said!! I found my internet support group really useful at first, and most of the the people there were really positive. But like you, I find that a lot of them now are very "woe is me" and I can't deal with that cr*p.

Brenda said...

I have been in a couple of internet support groups, and it seems that after a while, just a handful of the more vocal members take over. At that point, it becomes all about them and the flow of helpful information and true support for fellow members stops.