OT: On beginning your relationship with our online community. Or any online community

I posted this in Clouds' thread but he has asked that it be deleted, so I'm reposting it here. Clouds, this isn't just about you. This is true of the person who came here last week and told us all to stop mas-tur-bat-ing in order to cure our UC. It's true of everyone in your shoes:

You know, I'm a member of a bunch of different online communities. Some are organized around shared interest in music. Some in shared experience of illness, like this one for UC, or one I belong to for breast cancer. I'm not on Facebook so that experience could be quite different from what I am about to describe.

In every online community that I have been party to for the last dozen years, new members who come in *telling* the community something, rather than *asking* the community something are generally viewed with a jaundiced eye. If you want to spread the word, join the community, listen to others, share your personal experiences, offer insight and practical help and advice where you can and empathy where you don't have practical advice, and above all, avoid bombarding the members with your version of The Truth, especially at the outset.

We all have UC. That's why we're here. Most of us have tried an enormous variety of treatment options, including diet and medication. Someone with whom we have no experience who bounces into our community and purports to tell us all something that we *obviously* could never have thought of or discussed prior to his entry (insert sarcasm emoticon) is going to get a brush off. That's how all online communities work. You are faceless and anonymous. We have no history with you. We don't know you from the latest quack with the latest quack remedy. IF we trusted that you were in it with us for the long term, we would be much more ready to enter into a substantive discussion with you on the merits of your paper.

This has nothing to do with you or us. This has everything to do with the manner in which we are conversing. I'm sure that you have experienced virtually the exact response on every UC forum on which you have posted this information today.

I don't think they actually care....some are spambots, I'm sure.

As far as the others....there are always some who will try anything. But those "some" may be in on the same process...notice how many newbies answer in those threads??

The ones who want to hang out/be involved, etc will continue to do so.

Really...it's a great forum, but it's open to the world and all the perspectives. At least most of us have good filters.

q

damo123 said...
I strongly disagree with most of this. A forum is a place for public activity, it is open and it is by no means the "property of the established members". If newbies come here then I want to listen to them, hear their veiws and new insights. I've gained as much insight from the new members with enthusaitic ideas here as I have from the more established members (spambots aside). I come here looking for new ideas and I'm a great beleiver in encouraging open and frank discussion on topics. If this is constrained because the established members think that new ideas come from "faceless anonymous" indiviudals then this is almost a tribal sentiment.

Let's be open and encourage and foster ideas. Lets not put a hierarchical approach to people's post here.

Thanks. I was hoping someone would say this.

That's cool. In a large community, there will be many mansions. I didn't see any of you jumping on the no mastur-bating bandwagon, though, or clamoring to read Clouds' analysis of why UC is not an auto-immune disorder.

This was intended to be descriptive rather than normative, and I do think that for the vast majority, it is.

Certainly true. So the next time a Clouds pops in with an all caps HOW TO CURE UC, we'll all get behind it. I think that I was the only one who read Clouds' paper. My intention here was to explain to him why no.one was excited about his discovery. Perhaps you all were and just chose to indicate it by ignoring him. This can be a learning experience for all of us.

Some jumped on the sunflower/spinach bandwagon...it helped some. Some people jumped on the Paleo or SCD bandwagon...it helped some. The bottom line is no one knows for 100% what causes UC or cures it. Sure some members come across a little zealous, but we each have our brains to think. If some people want to go along with it, fine. If not, that's okay too. But I hate seeing people being slammed for what they feel is right in their mind. If you don't like what you read, ignore the member. No need to call them out on a public forum.

I think janey47's original post, in the context of its reply to the earlier deleted post, was brilliant and spot on.

What happened? I want to know! FYI you all need to laugh more, laughter is the cheapest most effective medicine, as emotions directly influence the bacteria in the gut! CRAZY ISN'T IT?!?

I never made that ASS-umption quincy.

I think people are taking this the wrong way. In my opinion Janey's post was more about explaining that it's important to respect each other and our experiences - including the OP. I don't think the intent was to say you HAVE to do anything in a particular way or that the way the OP posted was done in the wrong way but to explain that the reason it may have been misinterpreted was because of the fact that we are a community and it tends to be the case that when someone unknown comes into a community with an alternative view, often times their view will be interpreted in a way they may have not be as expected or desired. That's how I perceived it anyway and I agree with that idea. I have no opinion on the original post because I didn't read it. I definitely don't think doing what she mentioned has anything to do with UC but that's just my opinion and has nothing to do with my original post. As I said, I didn't ready the original post.

fightUC/BeatUC...I aim to please. I'm now laughing, and you know what...I feel better. Thanks.
q