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Closed community?

Posted: Sun Oct 10, 2010 1:00 am
by rlsfirefly
I see several of the same names over and over. I realize some are moderators but is the RLS community a closed one? People are welcome to post but how often do they stay? Do most people find an answer to their question and then leave or do many come back, maybe to help others? Not a criticism just wondering.

Posted: Sun Oct 10, 2010 2:49 am
by Polar Bear
There would be a core of people who regularly visit this site, there are others who come for a while, search out some information and then are gone, perhaps their symptoms have eased and they are in a good spell. We have many, many readers who don't get around to posting. And we have members who disappear for a little while and then come back.

Posted: Sun Oct 10, 2010 4:10 am
by ViewsAskew
As Polar Bear said, other that a few constant voices, most people come and go. They need help, they get it, they leave. A few months or years later they might be back. A few of us stay long term. Even that changes a bit over time.

It's certainly not closed in the sense that others aren't allowed. I do think that because some of us have known each other for a long time that there is a risk we seem insular. I hope we never seem unwelcoming.

Posted: Sun Oct 10, 2010 6:06 pm
by Neco
I used to be very active and post a lot. But at a certain point, it gets kind of depressing to participate in this fasion, as well as rehash the same information over and over again.

My RLS has been under control for a solid year and a half now that I got the majority if my addiction issues sorted out (and don't blow through my opiates). So as a consequence I really don't read or post much anymore except on a whim, while surfing the web in general.

We've never been a closed community, but in order for people to actively participate, they first have to want to participate.

A lot of people read the forums for info, and don't sign up. Which is the nature of message boards. Every forum has a core community of members who have been there from the start, or have settled in over the years.

But many of us do come and go, and participation will wax and wain with the severity of our symptoms. Occasionally some pop by to say they are still alive and doing good, etc.

Also, the RLS community, in terms of discussion and pro-active engagement, has been a rather small subset in the overall medical community. It took a long time to get doctors to start taking RLS seriously (still lots of work to do in that area), and lots of people have become accustomed to not talking about it, and many more are just plain unaware.

Posted: Sun Oct 10, 2010 7:08 pm
by Polar Bear
Glad to hear from you Zach, and excellent that your symptoms are so well under control.
Well done.

Posted: Mon Oct 11, 2010 1:48 am
by badnights
When I first looked on this board, I couldn't post, because I didn't "know" anyone and I didn't really have any specific questions, you see, so I didn't know what to say.

But after a few months, something really bad happened and out of desperation I posted a long question asking how the hell anyone could stand it because I couldn't. I decided, when people started replying, that I would be honest about where I live and what I do, otherwise the artificiality would get in the way of the experience of interaction and it would have no benefit for me. I'm glad I did it that way.

Now I jump in and say things so much that people probably are sick of me :lol: and the reasons I say things are three: quite often I think I can actually help someone; sometimes I just want to say something about myself (like, "me too" even); and least often now, I would like some advice. I think lots of us share these reasons for posting.

I imagine if my RLS gets under control I might not end up hanging around here as much, although right now I tend to think I would still be interested in the place.

Posted: Tue Oct 12, 2010 11:50 pm
by SquirmingSusan
Personally, I work very hard to make sure that everyone feels welcome here, and I know that Ann and Polar Bear (the other mods) do as well. And there is a great core group of people who hang around here and are always helpful, people like Beth (not sick of you at all and probably won't every be), Betty, Zach, and many others who will respond to anyone who posts if they think they can be of help.

There are other forums out there that are cliquish, or that are dominated by one or two people, but it's not like that here. And we try very hard to give good information and cite sources.

It hasn't been as busy here as it has been in the past, but there are a lot of reasons for that. First of all, doctors are much better informed about RLS now that there are two drugs on the market to treat it. So people don't have to spend as much time searching for help. And once people sign up, they can read everything in the forum, and most questions have already been answered over and over again, so it's easy to find answers. Of course, if people don't want to search the forum, we are happy to answer questions, and if people want to vent we're hear to help.