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Varied group of individuals all together talking in a support group setting.

Support Group

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.

Discussion topics

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. 😊

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cynthia Ventura moderator
    4 weeks ago

    Best wishes Rick @lawrphil with your group. I agree with DPM that you are a great choice for group leader.

    Topics I think might be helpful:
    -Caregiving
    What is important for both groups, what might the other person not understand, ways to improve communication

    -Mental Health issues
    How common depression, anxiety, fear etc. are in chronic illness, coping skills, what works for you, MH medication, the group as a form of talk therapy

    -Medication Issues
    Fears of taking certain meds, what’s worked, what hasn’t, side effects

    -Misc
    What are your greatest challenges, frustration with TV commercials (for laughs), how can we reach out to one another, others, RA in the workplace

    Just some thoughts…good luck!

  • Lawrence 'rick' Phillips moderator author
    4 weeks ago

    Those are great topics. Thank you for your ideas.

  • Layoun44
    4 weeks ago

    I would be so happy to join an on line group. Even though I am surrounded by lot’s of good people, not one of them can understand the struggle of just making life “look normal.” It gets lonely.
    It is also a topic I would love to see up for discussion.How do we successfully get across to people our limitations without feeling like we are complaining all of the time. Honestly. If one more person asks me what I do all day I’m not going to be responsible for what happens next. 😉
    Lee-Anne. Ottawa, Canada.

  • Lawrence 'rick' Phillips moderator author
    4 weeks ago

    Lee-Anne, I am not certain about the Canadian Arthritis foundation but I do knwo that the American Arthritis foundation has a nice open board single topic format which is building a nice community.

    If interested look in the Live Yes connect groups for the online board.

  • milliea
    1 month ago

    I would love to be part of this group. Do you have one in Massachusetts?

  • Lawrence 'rick' Phillips moderator author
    1 month ago

    milliea

    You are in luck. Massachusetts has tow. One in greater Boston with 28 members. The other is in Springfield and has 12 members. There is also a JA only group in greater Boston.

    To sign up go to this site and register

    https://connectgroups.arthritis.org/authentication/signin

    After registering select your state and check in on the various groups, including Indianapolis north (soon to be Carmel) that is the best one I am sure of it.

  • Lawrence 'rick' Phillips moderator author
    1 month ago

    there are two in Massachusetts.

    the first is Greater Boston and has 28 members.

    The second is in Springfield and has twelve members.

    The way to make contact is to go to:

    https://connectgroups.arthritis.org/authentication/signin

    create a user profile and then you will get to a state directory. We currently have around 140 groups nationwide so there is likely one in everyone’s area.

    I am sure each group coordinator would love to have new participants. I am sure you will find a great group.

  • Daniel Malito moderator
    1 month ago

    @lawrphil We joke Rick, but in all seriousness I think you are the prefect person to lead such a thing. Your humor and matter-of-fact ability to talk to people will be extremely conducive to what you’re trying to do. Soon, the legend of Rick the RA support guy will spread far and wide, and throughout the land of Indy North, arthritis sufferers will rejoice. I said it, so it’s going to happen. Congrats. 😀 Congrats, keep on keepin’ on, DPM

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