How to Start a Support Group

You may live on a farm or in a small town or  you may be live in a large, anonymous city.  Either way, you can still start a support group and people will come.

Here are some things that  worked for us:

One place to start is with your health care provider.   We let several health care providers in our community know that we wanted to start a support group for Chronic Fatigue Syndrome/Fibromyalgia Syndrome.  We left our phone numbers so that others could call for information.

Get a sponsor.  It's not imperative that you have a sponsor, but it helps.  When we started out, we contacted the Education Department of our local hospital.  Not only do they provide us with a room in which to meet, but they also send out our newsletter once a year and print our support group brochure -- all free of charge.

Find a place to meet. Most groups have found that meeting in a public place is better than a private home.  Libraries, churches, hospitals, etc. usually have rooms set aside for public conferences and meetings.  In looking for a meeting site,  take into consideration the comfort of the room.  Is it heated and air conditioned?  Are the chairs comfortable?  Is the room so large as to be intimidating? Often it helps to have a casual environment where people can form their chairs in a circle, and some can even lie down if they need to.  Is it easily accessible?  Is it environmentally friendly?   We found that meeting in the hospital works best for us.

Contact national organizations.  Contact the national CFS/FMS organizations to let them know that you are starting a new support group.  We have found them to be most helpful.  Most national organizations keep a list of support groups by state, and will refer others to your group.  Most national organizations will also send your new support group their brochures on CFS/FMS free of charge.  It's good to have a handout or two for that first meeting.

Set a time for the meeting. If you know other people with CFS/FMS, work together to come up with a good time to meet.  A daytime meeting usually works better.  If some members work, an early evening time may work too.  It's difficult for some with CFS/FMS to get going early in the morning, so setting it before 10 a.m. might not work.  A compromise might be to meet on a Saturday at either 10 a.m. or early afternoon.

Get the word out. Most newspapers are willing to do an article about a new support group forming.  In our case, they were willing to do a full page article about how CFS/FMS had affected the lives of two Rapid City women.  In the article they announced that a new support group was forming.  The announcement included the date, time, and place of the meeting and the telephone numbers of people to contact for more information.  You may also want to include an e-mail address.   We distributed flyers in the community (area doctor's offices, clinics,  libraries, hospitals, etc).  

Preparing for that first meeting

Hopefully several people are involved in starting up the meeting, but even one person can get it going.

You'll want to create an agenda.  It doesn't have to be long, structured or inflexible, but it will give you an opportunity to get the meeting rolling and keep it going.  You'll introduce yourself, then go around the room and ask people to give their names (name stickers are a great idea).   You could introduce yourself by saying, "I'm Judy and I was diagnosed with fibromyalgia seven years ago, although I believe I've had it for twenty years.  I went to five different doctors before I had a diagnosis.   I am no longer able to work outside of the home.  I am married and have two grown children.  I love to travel and visit the ocean."

Next you may want to talk about what people would like the meeting to do.  Some groups are purely talking and sharing, others have professional speakers, still others go to conventions and seminars together, renting a bus if people can't drive.  Our support group meets for two hours -- the first hour is set aside for a speaker and the second hour is set aside for sharing.

Refreshments are optional.  Just remember to make it easy on yourself.  We serve water at our meetings and that seems to work well.

Have a sign-in sheet.  It is important to get a list of those attending the meetings.  Make sure to include name, address (including zip code), telephone number and e-mail address.  We also have a form for new members to fill out (includes their diagnosis, ways in which they can volunteer, etc.).

You'll need a source of income.  No one person should have to bear the cost of making photocopies, paying for postage, making long distance calls, etc.  We have a donations basket placed next to our sign-in sheet (most people usually put in $1).  We've had rummage sales and we also have an account at a couple of area consignment stores.

One of the most important considerations in starting a support group is to share the responsibility.  Also, try to involve spouses or others who do not have CFS/FMS.  If one person is responsible for everything, that person may come to feel burdened and resentful. The group should understand from the beginning that it is self-sufficient, continuing to meet even if the "founder" cannot be there. Because we are in chronic pain and/or disabled, there will be times we won't feel good enough to go to the meeting.  "Things" happen -- like bad days, accidents, vacations, hospital stays -- and the meeting will not continue if everyone depends on one person to be there and "lead" the meeting.  A benefit of self-sufficiency is that people are allowed to grow and take responsibilities and feel they are each as important as every other member of the group.

It's also good the first week to have writing materials available for people to make notes and share phone numbers.  After that, the members should be responsible for bringing their own.

And you may want to make signs to post in the building to help people find the room.

That first meeting

The time is here.   You have your agenda, a sign-in sheet,  writing materials available, maybe some books or handouts on the subject.  The signs are up. You are in the room, ready to go.  It's nice to have someone at the door to welcome people as they arrive. 

Call the meeting to order, explain why the meeting was started, and introduce yourself and any other "founders."  We use the first part of each meeting to tell where the bathrooms are located, that it's a non-smoking building, etc.  We also ask that those attending not wear perfume, aftershave, etc. due to the chemical sensitivity of those in the group. At this point you could do an icebreaker.   

Once people have introduced themselves and are relaxed, you can ask what they would like to get out of the meeting, what they're willing to do, and from that point the meeting will start to gel.

Some members might want to exchange e-mail addresses or phone numbers.  Ask members if they want to have an e-mail/call list.  If they do, pass around a sign-up sheet and photocopy it for the next meeting.  Never give out names, addresses, etc. without permission.

Determine how often you would like to meet, which people will take care of arranging for the room, publicity, refreshments, donations, getting a speaker, etc.  Try to involve as many members as possible -- it  can help to build unity in the group and ensure no one person has to be responsible for everything.

Before leaving, set the next meeting date.  Leave the room the way you found it.  You've all just started something very special!

After that first meeting

We try to set aside time for anyone who's having a crisis or just needs to talk. You may want to go around the room and let everyone have up to five minutes to share.  It's not a bad idea to set up a time limit for each one to speak and a way to gently remind someone that they are going over their time limit.  There may be times, however, when someone needs more time.

Once we were established, we developed a support group e-mail list for  members so that we could send out an e-mail each month to remind members of our meetings.  We also use it to announce meeting changes, provide new information, query members, etc.  Other support groups use a telephone tree.  We never give out e-mail addresses or phone numbers without permission.

We contacted the local Chamber of Commerce's Health and Human Services Committee -- we were asked to attend their monthly meetings and we participate in their health fairs each year.  We've also put together a couple of CFS/FMS mini-health fairs.  Each month we send out a news release to local newspapers and a public service announcement to local radio and television stations (we include our meeting time, the name of our speaker, etc.).  

We developed a brochure for our support group.   We give them out at support group meetings and distribute them throughout the community.  

We have a policy that products cannot be sold at support group meetings.  That's one reason we put together a CFS/FMS mini-health fair.  We invited anyone who had ever wanted to sell a product to rent a space at our health fair.  It was a win-win situation -- we were able to find out about their product and they were able to sell it.

Continue to keep support group members involved -- keep asking for volunteers.

Consider sending out a newsletter.  We send out a newsletter twice a year.  It contains the schedule of speakers for the next six months and articles pertaining to CFS/FMS.