About Support Group Meetings

              None of us wants to have the disease of fibromyalgia. No one wants to have chronic fatigue syndrome or chronic pain. We’re not happy to have it. We would all cure it today if we could. All of us have war stories… We all have horror stories and tragic stories of our pain and of all that we have lost due to our symptoms. Unfortunately, if you have fibromyalgia or chronic fatigue syndrome, the medical field has likely told you that there is no cure. As much as we want to fully control our disease and symptoms; most of us have found that we can’t control it or get rid of it.

However, many of us have found that we can manage it and we can manage how we feel about our lives. It isn’t always easy, but many of us have found many things that work for us in managing our chronic pain and fatigue. Those of us who have found what works for us often want to make an effort to share it with others. Of course, what works for one of us may not work at all for another of us, but we can share our strategies in an effort to help each other. Many of us have found that we feel good about helping others and that helping others actually helps ourselves just as much or more than it helps the person we are trying to help.

In doing this work, we have found it is important to remember not to preach or to lecture each other on what we should do. Instead, we have found it effective to talk about what works for us personally, remembering to use “I” language. For example, rather than telling the group, “You all need to work out more and you’ll feel better,” we have found it more helpful to instead share something like “I have found it helpful to exercise a little bit each day instead of a lot at one time.” This way, the speaker is sharing what is helpful for them without lecturing or pushing their views on to others.

One of us who has learned how to manage his illness quite effectively for a considerable length of time, and who actually has come to feel quite content with his life as a result, once remarked after a meeting, “I don’t want to hear people crying and complaining about their lives. I want to hear about what works.” Ideally, we would all be here because we felt great about our lives and just came to help others by sharing what works for us.

On the other hand, many of us first come to a meeting feeling as though no one will listen, no one believes me, no one cares, no one understands, and no one can relate to my pain. This group, however, is a place where you will be listened to, you will be believed, you will be understood, and you will find that others can relate to your symptoms. This is also a caring environment. You can even ask for a hug here if you want and you will be given one. Research has shown that hugging a person can actually relieve stress and create an environment where some healing can occur in the body. However, for some of us hugs are painful, and we find it important to remember that before giving out random hugs.

There are no dues or fees required to attend these meetings. Senior members of the group do have resources to share with those who are interested. In the end however, no one ought to feel like they must do anything. We all make the decisions about what we want to try and when we want to try it for ourselves. In addition, no one is required to share at a meeting who doesn’t want to do so. Some of us come in with a desire to just listen, and many of us have found it helpful to listen, because we hear much of our own stories in what others share with the group. Many of us have found it profoundly helpful simply to meet and be surrounded by others who deal with chronic pain and chronic fatigue.