Running a successful support group is no easy task, which is why we have contacted Mary P. Harper, the retiring president of the Fibromyalgia Association of Houston Inc., a nonprofit 501 (c)(3) organization. For 16 years she worked with her board to run this support group and she has given us a few tips for a local support group. a First, we acknowledge that not all support groups are the same.
1) Define what your goals are. Look at your motivation and ask yourself, Why are we starting this group? You will need to be more specific than just wanting to help people with fibromyalgia (FM). For instance, do you want to have a social meeting, informational, political or other combination of these? Mary said, We found that having structure brought people back. We also wanted to keep our meetings fun.
Once you have your mission, now it’s time to get started with planning your meetings.
2) Create a list of helpful people in your community. You might start by looking for good doctors, alternative healthcare providers and other fibro-friendly professionals as you’re looking for guidance towards better health and well being. You might keep a list of such people, so that your group can share it with others, such as newcomers or clinics where FM may be diagnosed. Our group kept a list of doctors and lawyers who were recommended by members, commented Mary.
3) Create a structure for your meeting, so that you can be sure to have time to connect with your fellow warriors but also have time dedicated to learning something. One way to accomplish this is by having speakers. Anything that had anything to do with fibro was allowed at our meetings, explains Mary. We had mostly medical and legal professionals. Sometimes you can find speakers just through word of mouth. For instance, ask local doctors recommended by group members.
You have to be careful, Mary warns because people will start calling in to offer a cure for fibro. Mary said that in 16 years they did not pay speakers, nor allow people to sell to their membership. We were very careful to not offer endorsement of any products. You can even go so far as to have a disclaimer stated before each speaker.
4) Be willing to try something new. Once a year we ran a less structured event. We ran what we called an open forum. These meetings became very focused on personal stories and individual medical histories. Meetings like this might need to be balanced with something uplifting, like a holiday party or a meal. Otherwise, Mary added, if we spent too much time talking about our problems, we ended up with bad feelings about what’s going on.
5) Find a way that works to communicate with your group. Our group had a newsletter that was emailed out and mailed out. It is so important to stay connected with your group in between meetings. This was before the internet, and it was crucial. Newsletters done once a quarter provide valuable information and connection. Any size group can focus on helpful articles and updates.
6) Have a Question and Answer section at the end. This way the speaker is able to get through their presentation in a timely manner without being side tracked by one person’s story. We learned to hand out cards, so members could write their questions as they came up, explained Mary. This was a way to keep people from forgetting their questions. Then at the break, pick up the questions and distribute them to the speaker to answer.
7) Have a consistent time and location. Having it in the same place at the same time is really important. If you move it around it can be anxiety provoking, Mary said. Also, everyone wants it to be in our back yard, but we can’t be everywhere. So choosing a central location is essential to attendance.
Consult your group to see when the best time to meet is. We started doing Tuesday nights, and then moved to Saturday afternoons, which worked better than we expected, proclaimed Mary.
Although smaller groups can meet in homes, there are a number of public places that can be rented, sometimes free for community groups. Check churches, libraries, community centers, office complexes and even your medical center for conference rooms available at the time you wish to meet. We never had it at anyones house, clarified Mary, we were too big for that.
8) Social outings can work for close groups. Social outings work best for groups with members who live close together. If your group draws from a wider geographical location, attendance to social events may be lower.
9) Meet regularly. Over the years we varied from meeting once a month, which was ideal, to every other month, explained Mary. If you have the support, a speaker once a month, and then another outing on the off month would be a great way to keep your group engaged.
10) Leadership is crucial to the long-term success of your group. We had a board of directors and a medical director with an average of 50 people at our meetings until the internet came along, said Mary. If you want to start a group, do it with someone else. The risk if you run a support organization on your own is burn out. You can always start, and then recruit people to help with part of your meeting. It’s difficult with fibromyalgia support organizations because everyone is sick. Be sure to ask your members to bring in the support of their healthy spouses when doing big events, such as conferences.
We all start our support with great intentions. These are the lessons we learned from running our support group over the years.
Mary P. Harper ran the Fibromyalgia Association of Houston for 16 years. She has recently retired from her volunteer position.
If you are looking for a group online, you might want to go to Meet-up.