4773 Sonoma Hwy., #125
Santa Rosa, CA USA 95409
(707)538-9442 (voice)
(707)538-9444 (fax)
If the ICN has helped you
Review our
Revised: February 25, 1999
and/or given you comfort
during those difficult nights,
we hope that you
will become a subscriber.
Disclaimer
June 1, 1998: The Dark Side of the On-line IC Community
As a support group leader for several years both on-line and at two local hospitals here in California, I've found myself dealing with a very new issue in the last six months. What do we do when we find patients who feel that they are qualified to give medical advice or that they are experts on the many issues of IC?
Granted, we are all experts of our own unique experience.. but can any of us presume to be the bearer of all IC wisdom.
No matter what I seemed to try, this patient insisted that they should be able to post their messages on our message boards and that I would be hurting the on-line community if I removed posts that I felt crossed the line into medical advice.
In my opinion, each newly diagnosed IC patient stands at the beginning of a new road. As they progress
down it, and as they learn more about IC, they will find forks in the
road with a patient, or doctor or researcher beckoning and saying
"Come my way" or "My way is the right way." IC patients must remember that we cannot follow anyone elses journey. We are uniquely individual and must make the commitment to travel our own pathways.
I humbly submit to the on-line IC community that anyone who states that they are an expert should be treated cautiously at best. We are all single pieces in this great puzzle called IC and we are all ONLY experts of our own unique experience. For those of us in leadership positions, we must reaffirm that our objective is not to sway anyone elses opinion towards our own preferences, but to give them the encouragement and resources to develop their own.
Be a smart, informed and skeptical consumer. Gather information from multiple sources so that you aren't influenced by any individual bias. Research the pros and cons of any treatment or strategy that you are considering. And, always, review them with your personal physicians. - Jill, ICN Manager (June 1, 1998)
For more information on on-line safety, particularly for new ICers on the web, please visit our Safety First page.