I have been contemplating the value of online support groups and social networking sites. Value is not really the right word for it, but I am not sure what the right word is.
My first exposure was to a yahoo support group for Fibromyalgia. It did not take me long to realize that it was not the place for me. Each person on there had a signature which listed all of their illnesses and health complaints. The longer the list the more clout you had. People were listing every trivial thing wrong with them in an attempt to make their signatures longer. I was really turned off to it, and it did not help that I could not find an informative message thread that I was interested enough to contribute to. But to prove that “value” is not the right word I am going to address that this group clearly did have value as it had a lot of members – over a thousand if I remember correctly – and they all seemed very happy with their labels. From my perspective it was a group that embraced victimization and was not so much looking for answers to questions and improvement to their health as they were looking for a community of fellow complainers. Again, this is my perspective.
Since starting this blog I have researched many other online groups, and there are some great ones out there – great to me that is, which is purely subjective. Maybe that is the word. Maybe “subjectiveness” works where “value” does not because it is all subjective. It is a matter of taste, preference and compatibility. I belong to one in particular where I am constantly impressed with the thoughtful and informative topics that are discussed. I am impressed because that is what I am looking for in a group and that is the type of group in which I feel comfortable sharing. But sharing in an online forum can still be isolating and impersonal, which leads me to some of the things I have been struggling with.
Even on my favorite message boards, I see people who go unnoticed and unheard. I see people reaching out and getting no response. Last night for instance I found the following two posts by the same person to which there were no replies.
Post One
does anyone live in california in the san bernardino area? looking for support and and new friends.
Post Two
i feel so alone right now. just wonderd if there was anyone close to me or does everyone live so far away..
These posts broke my heart when I read them. I did respond to her with information on a local support group in her area, but it really got me to thinking afterwards. How many posts like this go unnoticed? How is she left feeling about her exposure and the group after this experience? How much responsibility do we have as members to reach out and help her? How much responsibility does she have to find the right online group for her needs? Is she even interested in the information I gave her?
These are my thoughts on a Monday morning and they have left me melancholy. I do not have the answers, but I do feel a responsibility and a need to authenticate my contribution to these boards. It may take me sometime to contemplate all of this, but then again, whatever I come up with, it will all be purely subjective. Welcome to my brain!
having fibro for most of my adult life(i am 70) I am somewhat a expert on feeling, pain, rejection, finding info etc on fibromyalgia….I don’t like support groups that whine…woe is me…..I want support. a lot of info and references to learn more about fibro…you are very right in your “diagnosis”….a support group should do just that, not be a place for whiners and complainers…
Thanks Jackie. I was hesitant to post this because I did not want to seem cold and judgmental, but I believe negativity breeds more negativity and I am just not interested in participating in that kind of group.
It is my goal to provide more informative posts in the future, not just the random musings of my brain.
I hope you have found a place to get support, info and references. It is no fun being an “expert” in Fibro, but it sounds like you are your own best health advocate.