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?