Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are home to the most active communities of AVM survivors, people living with psoriatic arthritis, fibromyalgia, and eagle syndrome, to name a few.
Thanks to our moderators who dedicate their time and effort to ensure that our communities remain safe and supportive.
And of course, thanks to our members who carefully follow the community guidelines which the Ben’s Friends family has developed over the years.
Here are some of the good practices that are observed in our communities.
Guidelines followed by our members
1. Discovering existing conversations, before making a new post
There are already thousands of posts on a community site. Oftentimes, somebody has already posted what one would like to seek clarification of.
In this case, some important information has been posted on the thread which has already generated followers specifically, those members who participated in the discussion.
Instead of posting right away, members are encouraged to first browse the site and find a topic related to their concern.
This way, they would already be able to find some of the answers they’re looking for so they would only have to ask a few related questions.
Aside from that, they could also meet other members who are interested in the same topic who would very much be willing to share more helpful information.
2. Avoiding rude posts
Naturally, our members avoid posting anything that would offend other members such as name-calling, abusive posts, and hate speech. Spamming and posting of obscene or sexually explicit content are also avoided.
3. Disagreeing respectfully
We don’t always have to agree with everyone’s post, especially if we’re certain that we know something that could provide a better option or improve somebody else’s situation.
Members may disagree with what a fellow member said, but they do so in a respectful way. And of course, if needed, it is the ideas that they criticize and not their fellow members themselves.
4. Choosing conversations
There may be times when members will chance upon posts that were better not posted. Members are encouraged to ignore these conversations and only participate in healthy discussions. By doing so, they help keep the community safe for everyone.
5. Flagging posts
It’s possible that members will be tempted to reply to negative posts and comment on unacceptable language out of their concern for the group. They are, however, advised not to do so because it will only prolong the conversation and cause them unnecessary stress.
Members are instead advised to just flag such posts so that the moderators can take appropriate action.
6. Posting only lawful content
And of course, members of Ben’s Friends communities only post pictures and other content that belongs to them. Whenever they post articles that might be helpful for other members, they always cite their sources. Usually, scientific research findings are shared by posting the link to the original article on the community site.
Making the communities even better for everyone
The guidelines that our members follow undoubtedly keep our communities healthy. Beyond these, however, are two rules that our Co-EDs Tom and Clasina apply to our communities which definitely make our communities even better. They are as follows:
1. To get support, give support
Support is a two-way street. The people that reach out and offer social and emotional support benefit from that in two ways. First of all, they get a positive feeling from performing an act of altruism. But as they support someone else, their own thoughts and emotions undergo a subtle change. You can’t encourage someone else to think more positively or consider a different way of viewing their situation without assuming some of that positive attitude yourself.
2. Describe, don’t prescribe
Nobody likes to be told that they are wrong. When you prescribe to someone else, the covert message is that the other person is somehow lacking because they needed your advice. When you’re feeling down, being told how to solve your problem just gives you one more thing to feel down about. On the other hand, when you describe your own experiences, it gives the other person the space they need to consider alternatives, to choose freely, and to feel some degree of satisfaction when they make progress.
From the very start, the mission of Ben’s Friends is to provide a safe and supportive community where people affected by a rare disease or chronic illnesses can connect with others like them. Keeping our communities healthy is key to continuously work in line with this mission.
Ben’s Friends is very fortunate to have responsible and caring volunteer moderators and members who make sure that the guidelines are strictly followed. With this, everyone benefits from all the support that our patient communities offer.