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Is Facebook a good place for IC support?

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  • Julie B
    replied
    Not only am I worried about misinformation being spread, or people's mental health issues not being addressed properly, I have seen soooooooo much SPAM on facebook for a variety of products and all of them that I have seen, so far, could really hurt an IC bladder.

    At least here we have the moderators to try to catch those things and delete them. It is very hard to monitor on FB..............

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  • cosake
    replied
    I agree that FaceBook is not the place to discuss private medical issues. I am much more happy coming to a special website such as this for that type of thing.

    I would never post the things on FaceBook that I post here, or on the MS site I belong to. Everyone on my FB list doesn't need to know/see those things. Most people on FB don't even know that I have IC or MS and that is the way I prefer it.

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  • flgirl
    replied
    I use facebook alot. I go on most everyday but wouldn't even think of facebook for support or chat or advise for my IC. That's what I come here for

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  • KarenAnne
    replied
    I use FB to keep in touch with friends, check out their pictures, chat with people I rarely get to see. I do not post day to day info on there. I would never post my medical info on there. I feel it has pluses & minuses like anything else. Thanks for always looking out for us Jill!

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  • tigger_gal
    replied
    I would say no because you don't want your social life on FB. There are people I know that have no ideam of my medical conditions, and I don't want everyone knowing. Say I wrote on Tracy's wall, who ever Tracey's Friends can see it, if Marg, Tracy and I are talking in a wall post who ever is there friends knows our business. Hope I explained that right. Thats why 98% of the people on my FB do not have IC. If we are friends and have IC they are on my FB. I just think some things have a limint

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  • Aza
    replied
    Personally, i would not feel comfortable posting anything about such a personal medical condition on Facebook because it is too public. I don't have thousands of Facebook 'friends' as many people do, but even so, my 'friends' include many work collegues whom i would not want be reading things about my IC. It's just too public for me at this stage of my life. I recon in time though, when my career is not such an issue, i might be in a place in my life where i feel comfortable enough to publicly talk about IC. I support anything that can help raise awareness for IC because the more people know about it, the easier it might make things for all of us in time. Right now, Facebook would not work for me, but i'm sure many other people would find it valuble for communicating and sharing ideas with other ICers. As always, thanks for all your effort and support Jill <3

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  • Julie B
    replied
    This is a conversation you and I have had over the last couple of months Jill, and I totally agree with you. I have personally changed the way I respond to people on the IC Diet facebook page, providing only general tidbits and advertising my book or pointing to interesting articles. In fact the American Dietetic Association has issued a concern about those type of social media in fear that interchange between "patients" and clinicians of one sort or another is a violation if HIPAA confidentiality laws....HIPAA regulates the electronic transmission of health and insurance data. Very scary from a provider standpoint....there are nurses, dietitians, physicians, psychologists, physical therapists etc who could be putting their credentials on the line.
    As for myself, I visit facebook a couple of times a day, but always make it a point to check in here. This is where I began.....this is where I feel safe posting the most personal stuff.

    <3 Julie

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  • fallenTXangel
    replied
    I got onto FB because a friend from highschool talked me into it. And, it's a great way to keep in touch with my family since we're in the navy, currently stationed over 2,000 miles away from everyone I know. Then I started playing games.. then I ended up with friends from all over the world lol But, I also used it to talk to other people about my endometriosis in groups over there. And, I managed to inform other ppl who were/are struggling with it. And, turns out, a friend I made on FB through an endo group and I both have IC. Diagnosed just a few months ago after we had endo surgeries with a top specialist a month apart. If it wasn't for her, I would have lost my mind dealing with all this alone. And she says the same thing about me

    I believe information is key. I'm not going to believe some random person in a group just because they say whatever is true. I have to go out and find out for myself (which is how I found this awesome place). But, I know a lot of ppl will believe anything.. so I like to inform and help whenever I can over there.

    And, I do talk to my friends on FB about my endo and IC (a lot of them are awesome cooks and have helped me cope with the diet). I get some awesome support, and even found out that maybe half a dozen ppl who were just game friends have endo and/or IC too.

    And the crazy thing.. my mom has just gotten onto FB within the last yr.. and she'll see my posts and then tell me she had no idea the pain was so bad, and how sorry she is that she never knew. The other day she told me "That IC thing sounds horrible! And I thought my MS was bad; sounds like you have it worse!" Wow. Ironically, FB has brought me and my mom closer.

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  • floridamom
    replied
    I love Facebook & have met online quite a few women who have IC. We still keep in touch, though it is thru private messaging. All my friends on FB know of my disease & I will post when I am in alot of pain, just to get some cyber hugs:-) I personally feel that thanks to FB I was able to make some friends with the same disease as me & keep in touch.

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  • dolphingirl31
    replied
    I also love this site. But sometimes when I post here it takes a while before anyone responds. I do love everything that Jill and all of the other support people do

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  • dyno
    replied
    I also love FB for the social aspect. Every now and then I will post a little bit about my IC but I have used it as a tool to educate some of my family and friends. My mom is on FB and she sees that some of the things I have said all these years are being confirmed by my friends.

    I have had IC for 35 plus years now and back when I was a teenager and diagnosed not much was known about IC. I was told more often than not by my family to just not think about it. So now I have do admit I feel some validation because it has shown family and even some of my high school friends that remember I was in the bathrooms all the time that there was indeed a reason for it.

    Support though is far better to get here on the ICN and medical information is much easier to find on here.

    Leave a comment:


  • klite
    replied
    I think that FB is a terrible platform for discussing anything private. I am one of the few people not on FB because after reading through their privacy policy, I learned that I would have none. I would never share anything there and I have asked friends not to post pictures of me on their pages. Once you post a pic, FB keeps it forever. And not just one copy of, but like 7! FB can share your information without your approval. FB is basically one huge data mining source. Sure, you aren't likely to have your identity 'ripped-off' but that doesn't mean that it isn't possible.

    My partner and I are extremely web-savvy as it is how we make are living. We are extra careful of what we put on the internet, not because we are paranoid, but because we fully understand the risks of having our lives put out there for anyone to see.

    We should be teaching our young people that what is done on-line stays on-line. It is incredibly hard to permanently delete information and pictures. They will live on forever in some corner of the web for most people. I find that a scary thought!

    The IC Network is way better for support and info than FB any day.

    Leave a comment:


  • traceann
    replied
    I love my FB - but only as a social tool. :-) Being a stay-at-home (erm, or not so stay-at-home) mom, it's my link to my social world, lol. Keeping up with my friends and relatives when I normally wouldn't be able to - takes a few minutes of my time and I am up to speed with everyone. BUT - that said, I really don't like to discuss health issues on there, even though I love being a member of a couple of the groups and the ICN on FB - it just feels "off" to me for some reason - I think I've been spoiled by this place I don't worry about who sees what or if some moron is going to start trouble of any sort here. I've seen those trolls in action and it's appalling. Most just want to get you riled up and reply to them so they can keep on perpetuating their nastiness, lol.

    So, I'll be social and chat away when I can, but for me - this is my main go-to for IC stuff! For me, I use FB as a pick-me-up with everyone, I like chipper and fun stuff - even if I am cranky and let people know, my FB friends cheer me up and I've not aired my dirty laundry, lmao!

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  • Dakota
    replied
    I highly agree with Donna on this one. I am a member of the ICN on facebook and it says so on my info. However, I never look at it. I would never share any personal information about myself on FB. It's fun to see what other friends are up to, and share some funny or interesting stories and pictures of relatives or close friends. This is the only place I feel safe and comfortable to turn to if I want to share or ask advice or even just vent. This is where I come to learn about others experiences and the latest reliable information on research, and I appreciate it very much. My uro/gyn has asked me how I know so much about IC, and I always tell him it's because of the ICN. I don't know what I would do if it did not exist. Thank you Jill, Donna and all the others that work so hard to make it what it is.

    Dakota

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  • dolphingirl31
    replied
    I have met some great people on FB w/IC some are even local which is what i was hoping to find. I take everything w/ a grain of salt but, I also belong to a private chat group where I can ask if someone has ever had the symptoms that I have had b/c well some of our symptoms are "strange". I have often, well just about every day felt as though I'm a freak for having these strange symptoms and I can see if they have them too. But I also have the Endo Research group,the ICN, The Interstitial Cystitis Association's . We also talk about other things too. It's a way to meet people across the country. I know it can have good and bad things but I can always delete someone if i don't agree or there is a problem w/someone/something. I try to research everything, my husband often complains i type too much. Thanks to all. Have a great day

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