There has been some discussion lately in regards to the removal of a blog or discussion and why it was deleted and why the author wasn’t given a notice that it would. There were also comments to the post regarding inappropriate language, etc. that also got deleted with the original message. The rules are found on the lower left part of your screen.
This is a member-driven group of great members who are here for one main purpose - for support. It works because we have rules to follow so that everyone can feel comfortable when they are here.
As moderators, we hold no special powers except that we approve members who really want to be here (no spammers or people wanting to sell you things), as well as check over posts that aren’t offensive to the members. We don’t get paid to come to the site that has helped us tremendously. We do it because our friends are here and like you, we want to support others and be supported in return.
When a situation occurs where we must make the decision to not approve or take down a post that is inappropriate - it’s very stressful and not something that is done in haste. It also can create stress for members who read the offensive post, causing a room divided. We are here to support, not to condemn and it puts all members (even moderators) in a very awkward position.
Please know that we’re only following the rules and along with the other 2,000 members, just trying to make this a place where we all can come, knowing that others understand each other.
Thank you everyone, for being the “true owners” of this great, safe place!
Thank You Sandi, I'm not sure what the post said but when I joined the rules for using the online support were laid out plain and clear! Personally I don't think that you need to use profanity to get your point across. Although I've haven't been on line a lot because of school and other commitments. I feel like this online support group is crucial not only for my physical health but mental health as well! I thank all of the members g taking ownership of this online support group!!!!!! Cinnnamin
Very well said Sandi, this is a support group and while many of us like to vent and this is a great place to do just that… We do have to be considerate of those who are reading what we write. I have seen LWF grow and a large part of the success here is because of our respect, care and consideration for each other.
It is only fair how everbody even those with quiet voices get heard we as humans are not perfect but we can learn something about a little self restraint and compassion for others thankyou to all the people who keep this site up and running jeannie
Since I don’t know what you’re talking about, it must be me.
The teacher in me asks, why not just ban the offending party(s) rather than an entire blog? But then I haven’t read the by laws. I’m sure you did what was best.
Well said!! I love this site and since joining in June/July (memory! can't remember!) I've gained so much from all the members and love the chats we have and support we get, but I'm afraid if there's a post full of inappropriate language I'll not read it, there's no need for it, there's a vast array of words to describe how we feel without swearing!
I'm so sorry you had a bad expererience, on this site it is for everybody including you and I would be happy to be your friend if you want to start over things happen that shouldn't and feeling get hurt and you don't expext it to happen here especialy take care of yourself and try not to let one person undo the work of so many kind and supportive people, but I understand that your hurt jeannie
Sandi - one of the best posts I've ever read on a Ben's Friends site and perfectly articulates what we are trying to build. All of us are owners of the site. And together we can make it a comforting, helpful and life changing place.
Most people don't know this but this Fibro site is part of a community called Ben's Friends (www.bensfriends.org) that includes 35 different support communities for rare diseases. We are now serving 60,000 people a month! It's amazing how many lives can be changed for the better when we all band together!