I am the leader of a new group to support people with arthritis. If that seems like a tough assignment, you are correct. The effort is called Live Yes Connect Groups, and it operates much like our community on RheumatoidArthritis.net except in person and local. I named my group Indy North Live Yes Connect and our only meeting thus far attracted three people including me. I am encouraged, however, because I anticipate it will take at least two years to get off the ground and let’s face it every group has to start somewhere. Thus far, there are more than 100 of these groups nationwide, and the list is growing.
Organizing an arthritis support group
Groups are divided into two types, those under 18 and adults. People with all types of arthritis, and their loved ones and caregivers are welcome. We get together to learn from and encourage each other.
To be a facilitator I had to take 5 hours of training and pass a test. I also have to attend monthly conference calls to discuss issues and swap ideas about how to improve our groups. So far, I think having more than 3 participants would be a great way to enhance my group.
Our first discussion was divided into two parts. The first part was the "get to know each other" segment. The second was about mouth sores that result from using our immune suppressant medications. Now that may not sound exciting, but as we know, mouth sores are the worst, and we traded ideas about what to use. I learned a new idea, and one of the other participants said she learned two new ideas, which might be helpful since she was suffering from mouth sores at the meeting. Real information in a timely fashion is essential and, when that information comes from other patients, it is powerful.
Connecting with others living with arthritis
What I want to report, however, is how important connection is in our community. One of the participants who attended remarked how much she missed just knowing others in her area with arthritis. Just like we rely on one another here in our online community, others thirst for an in-person face to face connection. I am hopeful that my little support provides that needed personal connection.
Who do I know with arthritis?
A future meeting will discuss online programming and resources. Recently, I was asked who I knew that has rheumatoid arthritis. I started naming many around the world that I value as dear friends even though we have never met. Many who use this forum were among those I named. In the middle of listing, my friend asked how I got to know these people. I said forthrightly, I sought them out.
The importance of online relationships
It seems natural for me to make friends online. But many others are not so fortunate to have those connections. That is where in-person meetups can make such a big difference. After all, no one should face this disease alone. Arthritis is too massive to be left only to doctors and family for support; instead, we need connection, and that is what makes my online relationships so important. While online connections are great for most of us, they are not always enough for others, and even if it is important, we can never have enough support.
Which leads me to a selfish question for the community: if you attended an in-person support group, what topics would interest you? If you have ideas, I will appreciate them. Your answers may make my little group in northern Indianapolis a leading-edge example of programming. That is if the facilitator can pull them off. 😊
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?