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Is Facebook a good place for IC support?

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  • ljharris
    replied
    Honestly, I've never participated in IC Network discussion on Facebook because I don't want to "come out" as having IC. My network on Facebook includes hundreds of professional colleagues; friends from elementary school, high school and college; and extended family. I don't want them all to know I have IC - and frankly, I don't think most of them would want to know, either.

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  • babygirlh1
    replied
    Facebook --- not so good

    What I don't like about facebook is the lack of privacy. A lot of my "friends" on facebook are actually people I work with. I don't want them to know when my pee is orange or if I had to go to the bathroom 50 times per day. I feel much "safer" and more open to share in a more private setting, like right here.

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  • KatieB
    replied
    Just to add

    I would love to "friend" anyone from ICN on my FB. Right now there's not a whole lot of interesting things going on and I can tell you that I don't really discuss IC there as I'm "friends" with lots of different people including ppl that work for my husband, who would try, but just wouldn't understand. I come here for IC support. But if you would like to friend me on FB I'd love it. You can see the pictures ofmy baby/Yorkie. And it would be fun to get to know you better. Just let me know you're from ICN and I think it would be great!!! (Katie Barnes tx)

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  • VCNJ84
    replied
    I post on FB I will talk about the fact that I have IC...and I will post IC articles in an informational way or have casual conversations about it.

    But I don't post in graphic detail on there like I would on here about personal treatments, odd habits and rituals I have for my pelvic pain management etc.

    I have had people private message me desperate for help...people who have not found a forum like this and I am happy to be more personal or direct them to other resources.

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  • VCNJ84
    replied
    FB seems to be a good place to connect to IC peeps.

    I find lots of Fibro patients on Twitter, but Twitter seems to lack IC promotion ( I am slowly but surely TRYING to change that )

    But for now FB seems a lot more active with IC people who post openly about it.

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  • SharonA
    replied
    I am on Facebook a lot. I also have 2 accounts. One is for those people who I know in real life. It is a way to make contact quickly and not have to make a phone call to do so. I use it as a form of E-mail. IC is never mentioned there unless it is a private message to a person who knows about IC because they are very close to me. I have used it for IC Awareness to those people.

    My other account was created for IC. I wanted a place where most everyone had IC and other related conditions. I also wanted a place where I was not a Support Leader and did not feel I had to do Support Leader stuff...just be an everyday Jane...,but where I could offer support sometimes, but mostly just a (((hug))) and a "I understand". Although, I must confess that the Support Leader comes out now and then. That is when I wish I could do something about the argumentative, ugly posts, and profanity like I can here. I have actually found myself looking for my delete button. Habits are hard to break...LOL

    I also use 2 different profile pictures of myself on the 2 accounts. I use the Profile Picture you see here on the ICN for the "IC FB" so people might recognize me from here. My other Profile Picture has me in shadow. If you did not know what I look like you could not figure it out very clearly with that picture.

    As far as confidentiality, like here on the ICN, I do not use my last name like most everyone else does on FB for privacy reasons. I do not have much personal information listed at all. I was very careful not to do that.

    I do believe that both methods of contact have good things about them. Here, we can ask questions about the condition we all suffer from, get some great information from everything Jill has made available to us and those who have history with this disease, help others, especially newbies, and be a comfort to those who are suffering so badly with something we understand without have to ask questions.

    On Facebook, we can get to know people through the personal things they post, like pictures of trips, family members, etc., but still have the connection of having IC.
    It is always fun to see the personal side of those I have originally grown to know here on the ICN. It kinda completes that connection.

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  • tigger_gal
    replied
    FB is for enjoyment, hooking up with old high school friends, keeping up with people that you you don't talk to everyday. You don't really want to discuss certian things on FB, unless it is a page for it. I would rather post whats going on with me here then there. Why? Because we all have the same thing wrong, or people here on the icn are supportive, and want to try to help whereas FB its just not that comfortable to do.
    Also my FB isn't where I want to discus my IC. I need that outlet that does not involve my IC.

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  • ABliske
    replied
    To answer the subject line in 1 word - no. I love facebook but it has limitations for sure, especially for me because I've added co-workers to my friends list. I have to be VERY cautious about what I post.
    When I first got it, I wrote 1 thing about IC and that was "I met another person with IC today!" I got questions about what IC was. And then, it was weird describing it in 1 line to friends I hadn't seen in 10 years. So, I never really wrote anything more about it.
    I much prefer this site because of the privacy.

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  • tchr013
    replied
    I think it is personal preference

    I have been reading the posts about why people do not share information on facebook and I understand your concerns and I can see why you don't want to. I have used facebook since it was originally for college kids and as long as I set all my privacy things I don't worry about the wrong people seeing my information. I use to connect with my family that is all over the place and also friends and even classmates I have lost touch with. I never used to share my medical conditions on facebook and my friends never knew how sick I truly was but then I started getting questions so I wrote notes here and there mostly about my neurostimulator and it helped people understand my situation. I also started talking about my IC not in great detail but because I was in the hospital and again there were questions. In a way, I am glad I finally posted about it because it helped me not to be so embarrassed or feel so ashamed about IC or other conditions. I also like to keep people informed that they should always be pro-active in their health care and not rely on their doctors to always be right. I do post about bad medical experiences but never any names or anything like that, my thinking is that I would rather keep people from experiencing the same bad situation I have gone through. I think if you want to use facebook to talk other people who have IC just use messages if you don't want everyone to see it, because if you post on the wall then everyone sees it. I also think that the more support you can find will help you deal and cope with your health problems/conditions better. Sorry it turned out so long but I wanted to share my thoughts on it.

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  • flowerangela
    replied
    i havent been brave enough to join an ic facebook group yet. from what ive seen theyre pretty cliquesh..really dont know where i fit in with this.anytime theres a bunch of women theres bound to be drama/people who dont like each other.

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  • LithEruiel
    replied
    Oh, well I guess I should clarify I'm not in any of the groups I just liked and joined the ICN and ICA...that's too bad that there's a lot of negativity on there.

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  • Julie B
    replied
    And I was just invited to yet another IC group on facebook. I have to say, if IC wasn't my business (selling the books) I wouldn't have anything at all on there about IC. I just wouldn't want to talk about it that much.

    Recently a patient wrote to me about all the negativity on the facebook groups. She was distressed, but thanked me for my positive outlook. I sent her hear. You should have seen how happy she was to find us!! :-)

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  • LithEruiel
    replied
    I just re-joined facebook last weekend and I love the updates from the ICN. I don't tend to come here everyday (and often I just check the threads I already posted in that I got e-mails that there were new posts in). I think it's going to be a great way to keep up with actual IC news. I added a couple of people from the board too...I thought it'd be a good way to keep in touch. I wouldn't post anything private about IC though (or any health issue), I'd send it in a private message. I have my privacy settings so that no one can see anything about me except my friends, but I know people find ways to do it. All of my friends on there already know I have IC or I don't care if they know. I don't know it's just part of who I am...I want to be a nurse practitioner and treat people with IC, I should be able to talk about having IC. It has been difficult for me in the past when people have found out who I wasn't comfortable with knowing (like my boyfriend's parents), but I can control who sees my facebook, so it should be fine.

    Everyone is entitled to their own opinion of course.
    Last edited by LithEruiel; 03-10-2011, 12:56 PM. Reason: adding more

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  • playethic
    replied
    I wouldn't use Facebook for anything related to ICN. In the past they've made changes to their privacy policies that are opt-out, meaning that new options are created that have sometimes revealed things to do with privacy that I would not have knowingly agreed to reveal. It's hard to keep on top of these changes that they make.

    I sometimes receive invitations to things (not IC-related) and those invites can only be opened in Facebook. So I find it necessary to have an account. But I don't like it, and have learned not to trust it.

    I'm not interested in reading (or exchanging) any info from ICN within Facebook.

    And I'm not comfortable with the idea that anyone might be able to Google or Facebook their way to information about my health / medical condition.

    I would rather that we brainstorm ways that we can improve 'social networking' aspects within the ICN site, if needed, or ask members what experiences they have within Facebook, that might add to their online experience in ICN.

    My two cents.

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  • bubbe1
    replied
    Face Book

    Hi
    I just had to chime in and say that I completely agree with Donna and others who feel that Face Book is okay for fun browsing and saying hi to friends and relatives, but that's all.
    I don't have my picture on there, and no one has posted any pics of me, my profile is brief and I am super careful about what I say.
    I think it's an okay site if you know what it's about and what the potential problems are, but, IMHO, it's not a place for discussing really personal or even politcal issues.
    BTW, there was a very interesting show about Face Book on CNBC last night, saying exactly what some here have said. Fun site to play with, but privacy is NOT well protected. They told about one woman, a teacher, who either lost, or might loose her job because she said some inappropriate things about teaching and the kids, etc, on FB. She was "talking" to some friend, I believe,(I only caught part of the story, sorry), and somehow the conversation got out to where it was not intended to be, and was read by many people.
    I guess everything cyber has it's good and not so good points-except for this support forum, which is wonderful!
    Laurie

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