A few weeks ago I followed my heart and deactivated the IC Network Facebook page. It’s still there just hidden until I feel that Facebook has become a safe, supportive environment again. The straw that broke the camels back was when I made a blog about the sexual harassment that some IC patients have experienced including the story of one IC patient who was forced to demonstrate how she self catheterized to a room full of male managers. Her employer, a Japanese automobile factory based in the USA, simply did not believe that she was ill. Her treatment at their hands was disgraceful, unethical and merited legal action.

Yet, on Facebook, my post was immediately assaulted by people who said “what does IC have to do with sexual harassment?” among other, more insulting comments. It suddenly dawned on me that these commenters hadn’t even bothered to read the article. They were a like of sharks circling our Facebook page trying to out insult each other at our expense. And that was it, I was done. I was not going to spend another minute trying to respond to their comments when, clearly, they hadn’t even cared enough to read the article.

Though originally designed to connect students in colleges, Facebook has been abandoned by most students and is now a vehicle where many older family members connect and stay in touch. The tragedy of Facebook, though, is the culture that it has developed over time.. an atmosphere that promotes insulting comments, fake news, extremism and depression. People have forgotten the message of “Debate the message, not the moral character of the people involved.” Most Facebook arguments turn into cruel, aggressive taunts that would never be tolerated if people were talking face to face.

The tragedy of Facebook, though, is the culture that it has developed over time.. an atmosphere that promotes insulting comments, fake news, extremism and depression.

Earlier this week, Unilever (Dove soap, etc.), a nine billion dollar advertiser on Facebook threw the gauntlet down by threatening to pull their ads if Facebook didn’t make substantial changes.(1) They said that they cannot continue to advertise on platforms that create divisions in society or fail to protect young people, pointing to a very clear erosion of social trust and the undermining democracies as the critical concern. I and countless users couldn’t agree more. The total number of active Facebook accounts around the world is down by 50 million, or 2.5 percent, since its high point of 1.968 billion in early 2017.(2) Users in North America are rapidly leaving the platform. Their membership decreased by 700,000 in the last quarter.(3) Users worldwide are spending around 50 million hours less time on Facebook every day.

But the far more important question is the future of IC Support on Facebook. Is it the right platform for patients to reach out, ask for help and meet each other? Many patients who contact our office say “No.”  They’ve shared that their groups became mired in hurtful, depressing and/or angry discussions. The strength of any online support group, especially Facebook groups, rests solely on the shoulders of the group leaders who must constantly monitor discussions and boldly enforce rules of kindness and compassion. Freedom of speech does not justify members taunting and insulting each other. Many health groups on Facebook have failed because the leaders allowed discussions to become demeaning, insulting and hurtful.

Even with good leadership, the Facebook platform is not the best setting for health discussions. Research studies have found the that people who spend time on Facebook leave the platform more depressed and sad than when they started. One study found that only 9% of Facebook user time involves communicating with others. Rather, most users appear to be just reading random discussions and posts on their FB feeds which result in a sharp decline in their moods. Yet, “they didn’t experience that same emotional decline when they surfed the internet. The toll on mental health was unique to Facebook” offered author Amy Morin. (4)   And it wasn’t just the relentless sad postings that we often see about deaths, illnesses, politics and so forth. Some struggled with emotions like being left out of events or envy as they read through happy moments of their family members and friends. “Facebook Depression” is a real thing, often the result of the online harassment and cyberbullying. (5). Yes, cyberbullying HAS happened in IC groups too.

My Personal Experience

Jill Osborne

I have more than 2000 friends on my personal account and have met some amazing women and men.  Their stories have been encouraging, heartbreaking, touching and tragic. In my mind, we are IC brothers and sisters. When I’ve accepted a friend request, I’ve done it with the intention of trying to be a friend. So, I find it absolutely remarkable that some of these now former “friends” had the audacity to visit my PERSONAL Facebook page and try to bully me. Some told me that I shouldn’t have a political opinion because I am a national IC leader. As I said repeatedly during the election, I will continue to discuss things that were and are important to me: women’s rights, health care, research, environmental issues. I will not be censored during what I believe to be a critical time in our nation. It is my responsibility as a woman to speak out about the issues that concern me. Period. I’m so grateful to those who stood up for me and said that I was entitled to have an opinion.

I can’t think of a single time where I have mocked any IC patient or friend by name in an on-line forum. I believe in debate the message not the moral character of those involved in the argument. Yet, again, some of those former “friends” had no problem mocking or criticizing me for my various opinions. Even patients I had known for years considered me an enemy for supporting the other candidate. 2016 was brutal on many families and friendships if not just for extreme political viewpoints. In the interests of full disclosure, I will continue to aggressively call out national figures and politicians who, in my opinion, are impacting the daily lives of IC patients, such as limiting their access to health care, reducing Medicare and Medicaid benefits, refusing to provide pain care, etc.

In 2017, Facebook provided me with some fabulous support during my cancer surgery. I am so incredibly grateful for those kind words of encouragement. It helped me.. and maybe, just maybe, that’s where FB can shine. If someone needs prayers, they are usually offered with open arms. It’s the daily stress of politics, crisis and the culture of anger that have forced so many of us to dramatically reduce our postings if not leave Facebook entirely.

I think that we must all see that social networking platforms like Facebook actually disconnect us from the real people in our daily lives. Please join me in putting down your cell phones during dinner and family events. Talk with each other. Listen, really listen, to those around you. Ask yourself what you can do to help family members and friends. Create some new family memories instead of retreating to another room where you might be alone reading your phone. How about playing a board game instead?? Or call someone for a real, voice conversation. Visit with a neighbor. Walk the dog. Get outside and enjoy nature! Sunshine feels good, right? Let’s take our lives back from this crazy on-line social networking culture which divides us.

Don’t forget to take off social networking notifications on your phones too. These are the triggers that many apps and software programs use to make you addicted to their platform. That constant ping we hear stimulates addiction centers in the brain that keep us hooked. It’s purposeful. Those software designers know exactly what they are doing. Social media addiction can be as habit forming as crack cocaine.(8) Really!  Check out this Ted2017 lecture by Adam Alter on how our devices are being used against us by software developers to create addictive behaviors.

If and/or when I reactivate the IC Network Facebook page it will be to promote a research study or project, however I will disable all comments until the culture and atmosphere of Facebook has improved for the better. Patients seeking information and help can and should CONTACT US directly through our website instead.

The IC Network Offers Refuge For Former Facebook Users

I am proud that the IC Network founded the first website and support forum for interstitial cystitis patients back in 1995. We have 25 years of experience running online groups and our ICN Patient Support Forum is fiercely moderated by our staff to be a soft and safe place where you can come and share your thoughts about life with IC. We have more than 50,000 active members and rarely do you see aggressive, hateful posts. When I say fiercely moderated, I mean it. You can report any posting that you find disturbing and we will quickly review, address and/or remove it.

Our goal is to provide you support. To show you that you are not alone. To give you encouragement. To help you learn from the hard earned wisdom of other patients. We want to empower you so that you can have better discussions with your medical care providers. We strive, every single day, to give you the most reliable and credible information that we can which is why not one, but two major peer reviewed research studies (Harvard Medical School & the University of London) found the ICN the most accurate and reliable website dedicated to IC/BPS on the web.(6,7)

But, you must remember a few key points about support online –

  1. Our forum lives on a public website thus when you create an account please don’t use your real name. Always create a pseudonym for your questions and posts.  Catlover? Dogfanatic? Have fun when creating your user name. You must use a working email address so that you can activate your account. If you don’t want to use your real email, just sign up for a free one using google, aol or hotmail first.
  2. IC patients are by their very nature unique and different. Now we understand why patients have such different experiences: the five potential subtypes for IC. Take a moment to learn about the subtypes so that you can see just how different patients are. One patients experience may not be yours and vice versa.
  3. Don’t rely on on-line IC groups/forums/message boards for your IC education! They are ONLY a place for you to meet others. If you are newly diagnosed, we strongly suggest that first read the educational information on our website rather than our forum.  Don’t guess about treatments and IC information. You need good, high quality information. You can also find excellent books written by leading IC experts at: http://www.icnsales.com
  4. Check out our Support Forum Guidelines before you begin. There are some great online survival tips there!

If you need a refuge from Facebook and a safe place where you can talk about IC, I hope that you will come visit our ICN Support Forum. We welcome you.


  1. Riley, C. Unilever to Facebook and Google: Clean the swamp or we’ll pull ads. CNN. February 12, 2018
  2. Kemp S. Facebook active users decline. TNW. June 2017
  3. Grigonis H. Facebook use has already dropped 50 million hours – but no biggie it says. Digital Trends. February 1, 2018
  4. Morin A. Science Explains How Facebook Makes You Sad. Psychology Today. Mar 07, 2016
  5. O’Keeffee G, et al. Clinical Report – The Impact of Social Media on Children, Adolescents and Families. American Academy of Pediatrics. 2011
  6. Routh J, et al. Does a Controversial Topic Affect the Quality of Urologic Information on the Internet? Urology. 2011 Sep 24.
  7. SA Turlapur, et al.Quality of information on the internet related to bladder pain
    syndrome: a systematic review of the evidence.
    Int Urogynecol J Published online- April 2013
  8. Elgan M. Social media addiction is a bigger problem than you think. Computer World. Dec, 14, 2015