I had been a member of the Inspire forum (Advanced Breast Cancer Group) since May 2009. When I first joined it was an absolute life line to others who had Metastatic Breast Cancer (aka Advanced BC) and gave me a sense of community with others that I didn't have on a personal basis. I live alone and have no immediate family. I don't feel able to ask what family I do have to help me because they are inevitably 'too busy', and I don't want to be a burden to them any sooner than I may become one.
The relief of being able to commune with others who just understood was immense; people that I didn't need to explain how the knowledge that your cancer cannot be cured actually feels like; people who just get it. You are starting from an even playing field. I have met very few of my friends on Inspire as many live thousands of miles away, but I feel a connection with them which runs very deep.
Recently there have been new members who seem to want to be argumentative and strident about their point of view and who just don't seem to get the concept of accepting other points of view. Heaven only knows I have had my run-ins with members over the years, but these new members seem to report others to the moderators using terms like 'mean girls' and turning things into a 'Junior High' sort of environment. Members have been banned because of this when they are expressing an opinion. These new members don't seem to have the empathy or understanding that others might be upset or having a bad day and in my opinion they are the ones who have turned it into a sort of Junior High with their complaints. We are all big girls, dealing with the biggest girl's problem of all - the fact that we have an incurable disease which will probably be the cause of our death many years before we should have died.
Sadly it is no longer a place I wish to be and that is really upsetting. It is now a place that is sucking the life out of me, rather that uplifting me and giving me a sense of community.
Will I ever go back ... right now I don't think so. I just don't need the stress. I don't know if the advocacy work I am trying to do is worth the effort. Hardly anyone ever comments on my posts, and I wonder if anyone is listening, or reading what I have to say. Some blogs get a lot of comments ... does everyone disagree with me? Am I wrong in what I write? Is there any point?