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Is Facebook a good place for IC support?

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  • #46
    I am a 24 year old with IC and Pelvic Floor Muscle Dysfunction, as well as Endometriosis and Vulvodynia. I have been in the hospital 38 times for pain in the past year and am undergoing surgery for an off market Neuromodulation device that will help eliminate my severe pelvic pain. I am not part of any IC Facebook groups but I have found a tremendous amount of support from friends, colleagues, professors, etc. from me updating my condition on Facebook. I am an open person, but I can understand why it is an awkward condition to approach. But if we don't increase awareness among our friends and those in the community we could be missing out on research opportunities like the one I am a part of, not to mention missing out on people you would have never guessed reaching out for moral support. It's about not being ashamed of our disease and not being embarrassed of what we can't control. Do I go into details? No. But if I'm not feeling wel I have many friends to brighten my day on Facebook and send prayers my way when I live far away or they cannot come see me for other reasons. I'm on a laundry list of meds, none of which seem to help with pain except dilaudid and my goal is to not need that after getting my device implanted. Flomax seems to give me weird side effects but helps with going. Anyways, back to Facebook, give people a little credit because many do actually care and I've rekindled friendships and made new ones from putting my IC out there.

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    • #47
      Ashmac, I love your outlook. We have to be more confident and open to increase awareness, and your attitude is beautiful. I feel the same way, and I have been thinking about vlogging about our struggles. If I do so, I certainly plan to use Facebook as a tool to share my videos.
      Tierney
      Message me and add me http://facebook.com/tierneybrielle.

      Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

      Do you have a question? Feel free to ask me anything; I am an open book!

      I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

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      • #48
        facebook is just the place of maintaining good relations with national and international friends and chatting on current affairs of the world. but the activities of IC cant be done on facebook as it lacks privacy which is major drawback of facebook
        Click here..

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        • #49
          I agree. There is a large population of ICers who are unfortunately uncomfortable discussing IC publically. And let's face it; FB is public. And while they have the right to make the choice not to discuss IC on FB, FB alienates a large population of ICers, and as a result their feelings and opinions go unheard and disregarded simply because they do not feel like announcing to the world they have IC. Some people simply feel more comfortable discussing their concerns in a more private environment where others understand the suffering they are going through.
          Tierney
          Message me and add me http://facebook.com/tierneybrielle.

          Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

          Do you have a question? Feel free to ask me anything; I am an open book!

          I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

          Comment


          • #50
            Originally posted by tierney View Post
            I agree. There is a large population of ICers who are unfortunately uncomfortable discussing IC publically. And let's face it; FB is public. And while they have the right to make the choice not to discuss IC on FB, FB alienates a large population of ICers, and as a result their feelings and opinions go unheard and disregarded simply because they do not feel like announcing to the world they have IC. Some people simply feel more comfortable discussing their concerns in a more private environment where others understand the suffering they are going through.
            There are private IC groups on FB though and you can make lists only have your posts visible to a certain list...like you can put your IC friends in a group and just have IC-related posts show up to them.
            ~Ashley

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            • #51
              Facebook is fine to discuss movies or books or your favorite shows with other fans like ICNDonna says, but that's about it. I've been on FB to discuss Glee, since I love that show, but the place is not moderated at all, and you get some very nasty people who have nothing better to do than to attack the show and other posters. I would NEVER post any personal information or use any FB pages that have to do with health or medical conditions. When I used FB I did not use my real name because I've heard too many bad things about privacy issues. In fact, I befriended a person who claimed to be a fan of Glee and was a "friend" of a lot of people I knew. Turns out he was a troll/hacker and maliciously broke into my account, used my email to send out vulgar photos, then I got a bunch of upset people at me. I ended up making an announcement on the Glee page about this. When I tried to report this person to FB, I could not; there is no way to report him. Instead I was instructed to "secure my account." If securing an account is an "option" and not something FB automatically does when you create an account, you can see why it is not a safe place to post anything personal especially if you use your real name.

              And here's a more extreme case of what happens with Facebook: I'm from Hawaii. We had a woman in Hawaii who worked at Straub Clinic who posted a former friend's medical information about her HIV on FB and MySpace. The former friend has since passed away from HIV but was traumatized by what this Straub worker did; her entire medical history was on display for the whole world to see! It was at least a couple of weeks before FB removed the offending page. The Straub worker was found guilty in court but the judge was so upset at what she did that he increased her sentence (more prison time) because he felt what the jury gave her wasn't enough.
              Last edited by Punahou Puns; 08-28-2012, 07:13 AM.

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              • #52
                I did notice the original thread was started early last year. Of course, someone decided to start it back up. OK. I can state I am on several IC supports groups on Facebook. By the way, most are private and/or closed groups. That does mean only members of the groups will see the posts. Also, there are many IC'ers that do post on the groups.(not many dudes like me) OK. That must mean many IC'ers don't mind getting IC support on Facebook. Besides, I have got many IC'ers on my friends list now. Oh! I will state I have posted about IC on my wall more than once. I am not ashamed. It is harder to raise awareness if you are ashamed to talk about it. Besides, most of my non-IC friends never comment about any of my IC posts on my wall. (or never got negative comments so far) Oh, yeah! I even got the IC Awareness Month poster on my wall now. I will post some stuff during September as well. Yep!

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                • #53
                  Cystic Acne?

                  Originally posted by babygirlh1 View Post
                  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.
                  I just noticed you listed cystic acne as one of your issues and I've had it since my teen years (I'm 69 now), so I thought I'd ask if you've tried ProActive--it worked for me. I recommend it to anyone who I know who has a problem with it. You can usually find it on eBay cheaper than the company sells it and you don't have to get into that auto-ship scheme. I found it was way too much product for me, so I stopped it. Hope you try it and hope it works for you too.

                  Carla

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                  • #54
                    FB has changed a lot for me since I last posted in this thread.

                    I am now in multiple IC support groups on FB. One is a private, closed and hidden group of about 130 of us. I have met some of my best IC friends ever through that group and I don't know what I would do without them.

                    I am in a few other private and closed groups too where only group members can see the information. Most of them are pretty good. There was one that was too drama-ish for me, so I simply left. But I like most of them. Now and then there will be a catty person, but moderators are pretty good with keeping drama in check. You really can't escape SOME drama on the web.

                    In the private and closed groups, I talk VERY openly just like I would here about treatments etc.

                    On my regular FB wall which is private in the sense that only friends can see it, but is filled with lots of healthy people I know from all avenues of life, I do post about IC, but more in an awareness stand point. I am way more open about my IC than many people and I WANT to spread awareness to the mainstream media and healthy people. I do have a pelvic pain blog where I talk about IC and some other things and I always post the link on my main wall and I appreciate when healthy people read it and comment. This is just me though b/c it is an important and daily part of my life to spread awareness.

                    I am in a position where there is no backlash from me posting about the IC to healthy people besides maybe someone making fun of me (which I would not care and not wanna be that person's friend). I don't have any co-workers or anyone else of that nature to worry about. I totally understand why some people want or need to keep it private. But I do have my limits...I would never go into details about my vagina or anything on my FB wall lol.

                    There are some women in the support groups who are very scared of family who don't support their illness or co-workers finding out, so they make a second name just to use the support group even though it is private. So that is always an option.

                    Then there are some people very open in the support group but who will not make a peep on their wall. Then there are people like me who will take any opportunity to educate about IC. You get all kinds...so def. don't automatically discount FB if you are on there.
                    Last edited by VCNJ84; 09-06-2012, 09:23 PM.
                    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

                    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

                    My Pelvic Pain Blog

                    FB Fanpage for My Pelvic Pain Blog

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                    • #55
                      Taking IC to FB is really a good idea it will have a much better exposure there...
                      check over here

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