When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. 

We think that’s one of the ways our forty-some community network is special. Each community reflects the needs of members and the personality of its moderators. How good is that?

That’s why the best people to speak about being moderators are the Moderators themselves:

PSC community has been very much a rewarding experience for me. To be going through a life-threatening illness and to be able to share with others going through the same things that has done well for you, to gain insights into others going through similar circumstances was invaluable to me pre-transplant.

Mark, LivingwithPSC.org

Being a moderator means its own set of wonders and rewards:

The other thing that constantly amazes me is how we are able to help people all around the world, support them, even help them with their emotions, through the use of bare, written words. No gentle tone of voice, no speaking gently, just able to be there, use that narrow means of communication which is the written word to catch people who are falling and offer them some support. I’m amazed how effective that can be, though I often put quite a lot of thought into what I say and how I phrase things, in order to try to get that calm, supportive tone of voice across.

DickD, AVMSurvivors.org

When we asked them about some of their “trade secrets” we heard things like this:

 … quite often I think of other people in my forum who I know have gone through the same experience that someone writing in front of me is going through and I openly or surreptitiously invite that other person to join the conversation.

DickD, AVMSurvivors.org

“Is it rewarding?” we asked. That one’s simple!




“Why should members consider being a moderator?” Quite honestly, we weren’t prepared for what we got from one of our veterans, Moderator Moltoub of BAFSupport.org (Brain Aneurysm Foundation).  And we weren’t prepared to edit it either! 

So here it is. In its glorious entirety: 

Do you have the right stuff?

When I first started out on the BAF support group, Ben’s Friends had recently been asked to step in and help the group. My year’s promise to my life-saving Neurosurgeon (Dr. Stacey Wolfe) had ended and I was looking for information and support. There was no physical support group anywhere near me. If it had not been for the moderators at that time, I wouldn’t have any support group today other than my family.

Why is having a healthy mindset community so important for a community of rare diseases? With all the obstacles each of us face, we need someplace to vent in a safe forum, a place to learn, to see that others face difficulties in similar circumstances. To understand that though we may have been thrown a curveball, there are folks who have learned with attitude and fortitude to slam it out of the park.

It’s important that we, as moderators, have attitude and fortitude. It’s important that we don’t isolate other members because of all the important things which make us human. Some of those things are religious beliefs, orientation…you know, all the things that say “we don’t discriminate”. It’s important that we don’t jump on the latest snake oil cure and really help our members look at the evidence-based facts. Mostly, it’s important that we understand that our members are at different healing periods and they haven’t read all the posts made over the years.

For me, being a moderator gives me a sense of purpose. I absolutely enjoy watching members grow and work through their grief and confusion. Our groups are often like an extended family. Some of the members are excellent researchers and can cite research or articles, some are excellent at providing emotional support, some are excellent at calling a spade a spade. Sometimes, there is that family member that you just want to not invite for Holiday dinner next season. Then the group steps in and we get to read a lot of healing strategies.

So why should you become a moderator? A few hours a week spent helping others is a positive goal that we all should strive for. Because you’re probably doing the work as a member of your group and don’t even realize it. You’re the one that responds to the odd question, the member who posts and you reply, the one who says You can do this! The one that thanks the moderator in your group. Believe it or not, you will feel better for helping others both physically and mentally. Stanford has an entire department working on the virtues of helping others. You should become a moderator because you’re the helper in the family.

And if you should agree to take this mission, you might one day get to meet Seenie, TJ, Ben, Sharon, Merl or any of the other moderators in your group or heck, in Ben’s Friends!

Please contact ModSupport@bensfriends.org if you’d like to take a chance, take that first step forward, just say yes!

Moltroub, BAFSupport.org

And that’s the last word.