Starting a Support Group

by Karen Lee Richards, ChronicPainConnection Expert

If you are thinking about forming a support group, these six steps will help you get started:

1. Evaluate the need

Is there already a support group in your area?  If you find no group, or if you discover you can’t support an existing group’s philosophy and goals, it may be time to consider starting a new support group.

2. Evaluate yourself

There are six questions to consider before you decide to take on the responsibility of being a support group leader:

  • Do you have the time necessary to plan and publicize the meetings, coordinate special events, and talk with individual members who call with problems?

  • Are you committed to attending the meetings, even if you’re having a bad day?

  • Do you feel comfortable in front of a group?

  • Are you able to be assertive enough (in a kind way) to keep the meeting on track?

  • Do you maintain a positive, encouraging and hopeful attitude?

  • Are you a good listener?

3. Find a co-leader (or two)

Leading a support group is a lot of work. No matter how dedicated you are, there will be times when you cannot attend the meeting. You need to have one or two people you can depend on to back you up. Another advantage to having a co-leader is that you can split the responsibilities, both behind the scenes and at the meetings. A good co-leader should have the same qualities as a good leader (see #2 above) and you should agree on the philosophy and goals for your group.

4. Start With the Basics

Just like a reporter, you need to answer the five Ws: Who, What, When, Where, Why.

  • Who is to be included in this group? People with: fibromyalgia? chronic fatigue syndrome? chronic pain? chronic illness? some of the above? all of the above?

  • What are you going to call the group? The name should identify what the group is about.

  • When are you going to meet? Meetings can be quarterly, every other month, monthly, or even weekly. If you’re not sure how much you can handle, it’s better to start with fewer meetings and increase the frequency as you are able and the need demands. You also need to determine the day of the week and time of day you want to meet. Finally, you’ll need to decide how long your meetings will be. An hour and a half to two hours is generally about all most people with FM and CFS can handle comfortably.

  • Where are you going to meet? Some smaller groups meet in a home, but generally it’s better to chose a public place. Often hospitals or churches will allow you to use one of their meeting rooms at no charge.

  • Why are you forming a support group? This may be the most important question of all. What is the purpose of your group? Most groups want to educate and encourage members. Beyond that, do you want to spread awareness in your community? Are you interested in working to change national policies relating to your illness? Would you like to raise funds for research? This is the time to set your beginning goals for the group. It’s best to start small and expand your goals as your members express an interest and show a willingness to participate in other areas.
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