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  1. #1
    ICN Founder icnmgrjill's Avatar
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    Mar 2000
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    3,791

    Angry ICN Facebook Page Deactivated

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    After eight years, I've decided to pull the plug on the ICN Facebook page. Last year, my life was dominated by uterine cancer, surgery and then devastating fires that forced our evacuation. It was exhausting. This year, my goal is to be productive, focused and, most of all, surround myself with kindness. Sadly, kindness has become a rarity on Facebook. I think that the Facebook culture has empowered people to say very nasty, mean and cruel things. Conflicts are rampant in almost every support group. They seem to revel in saying mean, cruel things and almost swarm around opportunities to be critical.. as if it's a contest to see who can be the meanest. As a platform, I don't see that as being fixable. I think it's fundamentally flawed and one reason why our culture is so divided right now.

    I am also absolutely tired of responding to a small but vocal minority of people who seem to enjoy creating conflict and criticize our images, posts, blogs and so forth. The straw that broke the camels back for me was just after New Years. We have used, for over a year, a lovely picture of a young family on our website and as the header on our social networking platforms. That image says, correctly, "IC is treatable." Our goal, of course, is to encourage and empower patients to explore treatments that work for many. Over Christmas, I removed that image and placed our holiday image up. After New Years, I restored the original picture. Some Facebook users went ballistic... claiming that we were setting up false hopes, that IC was incurable, yada yada yada. But, what struck me most is that they clearly had never been to the ICN Facebook Page or our website because, hello, we've used that image for a year. It was not new. It had never been criticized before... and, no, I'm not going to use a picture of a woman or man crying to set the stage for our discussions. I choose to use happy, encouraging images because I want patients to feel hope.. not despair.

    Well anyway, I'm just done. I refuse to be the butt of jokes and/or a punching bag for a small minority of people who seem to enjoy insulting and hurting others. So, you'll see me a lot more over here. I've wanted to do this for the past few years. Our consultants encouraged me to do it two years ago. Every doctor who has looked at FB has said it's a terrible platform for IC information and support. I agree completely. FB needs to take responsibility for their negative culture as more and more people, organizations and businesses choose to leave.

    :::sigh:::

    Jill Osborne
    ICN Founder
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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  2. #2
    ICN Member
    Join Date
    Oct 2016
    Posts
    142

    Re: ICN Facebook Page Deactivated

    I think you did the right thing. There are many people on FB that make it their duty to post negative posts. I always pride the ICN forum for their promoting positivity for patients and how a negative experience can quickly be turned into a positive one with the knowledge of other individuals going through the same thing. I can say this website is a blessing and provides much more hope and resourses than any other fourm or website Ive ever been on. I mat some pretty awsome people here and discovered new treatments to try and I am even able to share my story and tips i have learned myself with others. Lets continue to grow this fourm and spread the love ❤
    Last edited by Jamie123abc; 01-09-2018 at 01:10 PM.
    "She Believed She Could So She Did"
    PGAD/IC/PFD & Hip/Leg pain
    On: Hydroxyzine HCL 10mg, Nortriptyline 10mg, Clonazepam 0.5mg, Uribel as needed, Tramadol 50mg as needed
    Things I do everyday: Drink tons of water, Breathing Techniques (4-7-8), Ice/Ice Massage, TENS Unit

    ***Diaphragmatic breathing***

    • Make a daily routine!
    • We can't control what happens to us, but we can control how we react!
    • You can't predict the future, your next treatment may work!
    • You never truly fail, if you never give up!
    • Never Ever Giving Up!


  3. #3
    ICN Member Songbird's Avatar
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    Mar 2016
    Posts
    571

    Re: ICN Facebook Page Deactivated

    Jill,
    You are such a source of inspiration and courage and you work so hard to help people.
    I agree with everything Jamie said.
    I am one of the very few people I know in my job, family or friends that has never been a part of Facebook and never will be. That whole forum/platform disgusts me.
    Iím glad you pulled the plug.
    I love this IC Network Forum and it has helped me more than anything or any single one person or doctor.
    Thank you for all of your dedication and hard work.

  4. #4
    ICN Staff ICNDonna's Avatar
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    Mar 2000
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    Oregon
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    41,972

    Re: ICN Facebook Page Deactivated

    I like seeing positive comments about these forums and Jill. Thank you!


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

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