I was most pleased to see the large response to the Mar. 27 posting : “Some thoughts about the Bulletin Board”. It was particularly wonderful to have so many people respond, especially those from whom we don’t hear very often. Certainly the consensus response to the original question was, “Don’t mess with a good thing!” It is clear that the great majority of Bulletin Board frequenters feel that the BB serves an important purpose for a large group of people. It is a form of comfort, of family, of belonging. It is a place where you meet your friends to give or receive sympathy and advice, and a place to share the disasters and the funny incidents that happen to us because of our strange malady. We are so used to trying to explain our bizarre behavior to the public
at large that it is a wonderful relief to come to a place where we don’t have to explain anything, where everybody understands.
As to the question of how best to deal with new patient/visitors who might be confused when they see a strange hodgepodge of messages on the board, some dealing with medical problems and others with non-medical ones, there were a number of good suggestions:
1. One of the most useful, I think, is to start a new posting when you have a new subject you are bringing up. If you will go back and review some of the longer threads you will see that often the original message is long forgotten by the 20th or 30th response. By then the conversation may have gone through 3 or 4 changes of subject. This can be discouraging to a person looking for specific information.
2. Some of the more personal messages back and forth between only two
people might be handled by e-mail.
3. We can probably re-work the “Welcome New Patients” message at the
beginning of the BB to try to urge the new people to register and post. Our group is always helpful, quick and compassionate at responding to new patients. We can also urge them to use the search function to take them directly to the information they need.
4. One very valid observation was that we cannot appeal to 100% of the people all the time. We can try, but someone will always feel left out and there is not much we can do about it.