Fibromyalgia support groups can be a really big help, but they can also be a disaster, many times it depends on who is running the group. I’ve attended groups where people where whining and complaining and I felt that there was very little support between the members. The quests speakers were generally pharmaceutical representatives, whose real purpose was to market their medications. Other guests included doctors who spoke about no solutions. In fact one group I attended had a doctor use these words “Buck up and deal with the pain, you are adults and there is nothing you can do about the illnesses.” Many of these groups provided coffee and pastries which is the worst thing a Fibromyalgia patient can eat. It verified my thoughts that these groups were not being handled very well. Needless to say, the members felt worse upon leaving but were strongly encouraged to keep returning.
One particularly awful group I had attended was lead by a minister who proclaimed that Fibromyalgia was “God”, punishment for some wrong these people had done in their lives. To say the least, this was pretty extreme and left the people without any hope and more depressed than when they arrived.
Unfortunately, there are people running fibromyalgia groups and they have their own agendas (as in everything else in life).
I’ve also attended good groups were there really was an emphasis on people supporting one another. The key is always the person who runs the group.
I can give you a short description of the groups which I had run in the past. My main goal was and is to get these people to bond with each other; after all, they share a common illness and can certainly identify with each other to a large degree. My emphasis was always on the positive, and if I sensed somebody starting to slip into a depressive mode, I’d allow them to vent, but I or another member would immediately come to their aid and shower them with support and understanding.
One of the goals of the group was to help the fibro sufferer have a real understanding as to what was going on in their bodies and to provide helpful tips on how to manage the illness and how to lessen the symptoms. However, I should note that this was, in no way, presented in a lecture format, but as a very informal friendly setting. I would usually attempt to have at least one guest a month, but my main criteria with guests were that they would provide warmth, empathy and most importantly laughs. I’ve gone as far as to have comedians, representatives from the humane societies with some puppies and kittens, anything to bring a smile to their faces. I’ve had clowns, magicians, you name it. This is not to say that the groups were not serious, as we were dealing with a serious illness. I’ve also had dieticians who brought samples of very healthy foods. The members were always amazed at how easy these recipes were and how delicious the foods were.
Our members would generally want to exchange phone numbers and would become really supportive friends. It would reach a point very early on that these people would bond in a very affirmative way and would know that if they were ever feeling particularly down and very depressed, they could always call one of their friends from the group.
I also tried to limit the groups to 10 members, which meant that at times I was running 2 or 3 weekly groups.
Nobody in the group was ever forced or coerced into speaking and generally when a group would start, we would have some who just sat and listened. However by the third or fourth meeting, these people would inevitably become a part of the group. I would constantly be surprised at how these silent types would quickly open up and many times become a kind of the “life of the party”. With all modesty I can tell you that I never had a person drop out of the group.