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Is Facebook a good place for IC support?

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  • ICNDonna
    replied
    What I was trying to say, and didn't say very well, is that Facebook may be fine for social networking, but not as a place for support.

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  • KatieB
    replied
    Cyndi

    I know about the privacy stuff and I'm sure my kids do too. But I still like to be a little nosy and I'm close with them so it gives us something to talk about!!
    BTW, they are WAY more computer savvy than me, lol!!!

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  • cmclien
    replied
    Like others, I only use facebook for superficial chatter, would never mention anything about my IC there.

    Those of you who are on there to watch your kids, I don't think most parents or people realize that you can totally customize who sees your posts. For example you can create groups of your facebook friends. I have a group of High School friends, alot of these people I barely remember and don't want them seeing my status. So my default status excludes this group and a couple others. My status posts NEVER appears on their newsfeed.
    So if your kids are very pc savvy they could easily do this. Might be better to actually have them give you their password and login and just check their profile once in awhile.

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  • KatieB
    replied
    Kids!!!

    LOL!! That's how I started on FB was checking on my kids, 19 and 21!!! I used to post a lot of daily funny things on my own page for my friends but since the "Flare of 2010 & 2011" there's really nothing to talk about. Nobody wants to hear about my uro appts and my pelvic floor therapy. And frankly, I don't want to tell them about it. BUT, I do still read my kids pages!!!

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  • VickiB
    replied
    Like Suzanne, I use Facebook to keep up with what my daughter is up to. Though my daughter is 29.

    Even though I know the ICN has a presence on Facebook I rarely have posted there. I suppose I consider my health issues a private matter only to be shared with those of my choosing. Facebook is way too public. I limit my FB exchanges to topics that fall under the heading of drivel.

    Vicki

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  • suzannes
    replied
    I hate to admit this and don't think I'm a bad parent, but I use FB to see what my 16 year old daughter and her friends are up to. I made her friend me, I look at her pics and wall stuff. These kids say some really nasty stuff on FB! I would never talk about personal stuff like we do here on FB because too many people can see it and don't really understand what we are going thru.

    Suzanne

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  • KatieB
    replied
    I use FB to keep up with friends but certainly not for medical advice. I don't even take medical advice from my friends without checking with my Dr first.

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  • kadi
    replied
    I use facebook mainly to keep up with international friends or local friends I don't get to see often. That's it. I don't do much IC stuff on there because it just isn't as private as here with my screen name.

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  • ICNDonna
    replied
    I think Facebook is a very good place to carry on daily chatter --- like talking about a good show or a good book --- or even recommending restaurants. As a place to get valid information about any medical condition, or to give and receive support, I would have to give it a "D minus."

    I rarely go there any more.


    Donna

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  • icnmgrjill
    started a topic Is Facebook a good place for IC support?

    Is Facebook a good place for IC support?

    I confess that I haven't used this journal as much as I should have in the past year mostly because I was exploring Facebook and how we could use it for IC. It was a good year. We have several groups on Facebook and an official Interstitial Cystitis Network page. I've got about 1400 IC friends over there but, to be totally honest, I don't like Facebook very much. It's time consuming. But, more importantly, it's a bad platform for health information.

    Facebook has significant problems with quality of information and the lack of moderation. For example, I once saw a patient ask an IC patient if she should have heart surgery. Yikes! Still other patients don't cruise the web, they don't read books. They just read Facebook chatter and think that that is good information. Unfortunately, it's often not.

    A good example is something that happened on one IC group where one patient reported that "end stage IC" was a fatal condition... terrifying patients that IC could kill them. Absolutely NOT TRUE. Yes, there can be a very rare case of an "end stage bladder" but even that could be treated with surgery.

    One of our own moderators read a posting on Facebook from a patient who was have serious suicidal thoughts. Unfortunately, there was NOONE moderating that page and some else unbelievably posted personal information about this patient, completely violating their privacy. It took 24 hours to find someone who could do a welfare check on this patient. Facebook has few effective controls that can reach out to teens or anyone else struggling with serious depression.

    But, what makes Facebook scary at times are the "trolls" people who go on power trips by hurting or putting down others. We've certainly had this happen a few times on the ICN over the years but the advantage we have is that we can shut them down immediately. Facebook, on the otherhand, has few controls. This isn't about controlling content... it's about protecting people from others who, in many cases, may be mentally ill.

    So, for the past few months, we've been having big debates about how to use Facebook for support and, honestly, many credible groups, businesses, pharma are backing away from Facebook and, if they use it, are only doing so for basic announcements. I refer to Facebook as the "wild wild west" of the internet and it worries me.

    What do you think??? Are you using Facebook?? Have you ever been upset by things that you've read or experienced on Facebook. I would love to hear your opinions and experiences, both good and bad. Make no mistake... I love being able to meet so many IC'ers over there. They are great but the format just seems flawed.

    Jill
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