//Facebook IC Support Found Lacking

Facebook IC Support Found Lacking

Ok.. I’m going to say it. After investing three years into exploring Facebook, I think it’s just terrible for IC support for several reasons. Patients are now leaving in droves for several reasons including:

#1 – Anyone can start a “group” and many “group leaders” over there have such poor knowledge of IC that they lack the education to really help others. Some also have personal agendas that they allow to dominate the group values and norms.

#2 – Most of the IC groups over there have imploded and are filled with conflict, stress, name calling and very childish behavior. They don’t seem to follow the concept of “debate the message and not the moral character of the poster.” Some of the fights have even drawn in family members and children of the IC’ers.

#3 – Some “IC’ers” have absolutely no interest in helping others… and will willingly post things that upset other patients regardless of the consequences.

#4 – There are no controls or moderation abilities thus when someone is mentally ill and/or disrupted, they can be very difficult to quiet down.

$5 – Some patients believe that they are qualified to give others medical advice without any medical training and have done so to the detriment of other patients.

#6 – Some patients believe that they are qualified to intervene when another patient is despondent and possibly suicidal.. without making the critical and potentially life saving referrals to a mental health professional.

At this point, I really see very little hope for Facebook IC groups and any other health groups. Worse, most professional organizations agree and are now advising their members to NOT participate in Facebook health discussions due to the conflict and, worse, potential liability.

What do you think? Is Facebook hopeless? What’s your experience been?


By |2017-01-18T12:09:41+00:00November 5th, 2012|Interstitial Cystitis Network Blog|Comments Off on Facebook IC Support Found Lacking

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.