With a condition such as chronic fatigue syndrome (CFS or ME/CFS) or fibromyalgia (FMS), finding support is an important part of coping. Even people with understanding friends and family may feel better able to be open about what they're going through if they know the people listening really get what they are saying. A support group can fill an important void in a lot of lives.
If you're thinking about starting a support group, these six steps will help you:
1. Evaluate the Need
Is there already a support group in your area? Read Finding a Support Group for suggestions on locating a group near you. If you don't find one, or can't find one where you're comfortable, you may want to consider starting your own.
2. Evaluate Yourself
Consider these six questions before you decide whether 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 keep the meeting on track, while being kind enough to create a supportive environment?
- 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 and you should agree on the philosophy and goals for your group.
4. Look to 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, its 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 FMS and CFS can comfortably handle.
- Where are you going to meet? Some smaller groups meet in a home, but generally its better to chose a public place. (That way, you don't have to worry about your house being clean!) 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. Its best to start small and expand your goals as your members express an interest and show a willingness to participate in other areas.
5. Set a Meeting Format
The meeting format should be a comfortable fit for you and your members. Here's a sample format:
- Welcome, announcements – 15 min.
- Program, speaker – 45 min.
- Questions, discussion – 30 min.
It is important that the meeting always start and end on time. People will quit coming if meetings drag on and on.
6. Publicize Your Meetings
- Check your local newspaper to see if they have a section for meeting and event announcements. Talk to a reporter or editor from the health or women's issues department to see if he/she would be interested in doing a feature story about how your illness has changed your life and why you are starting a support group.
- Some radio stations, particularly in smaller towns, will announce meetings and events for local service groups.
- Design a simple flier announcing your meetings, make copies and ask permission to distribute or post it at area hospitals, pharmacies, doctors' offices and public bulletin boards.
- Look for online outlets where you can list your meetings. You might consider setting up a personal webpage. Also, some advocacy groups list support group information on their sites. Look around for message boards where you can make announcements as well.
It takes a very special person to reach beyond his own health problems to help others. In doing so, however, you will probably find that you gain even more than you give.
