“I wanted to give up. I thought about going down to the lake and jumping in,” said Mike one February morning.
“You can’t do that, Mike,” answered Gene. “The lake is frozen. You’d have to cut a hole in it.”
“By the time I cut a hole in the lake, I’d be too tired to jump in!” This reply brought a round of laughter from my support group.
I am the youngest member of a multiple sclerosis/fibromyalgia support group (actually, anyone with chronic illness is welcome). Our goal is to help each other cope with the challenges we face—physical, of course, but also mental, emotional, and spiritual. We try to focus on things that make us laugh, smile, or feel good.
I was apprehensive about my first meeting. Would I actually benefit from sitting in a room with a bunch of other people who did not feel good? Maybe the group would bring me down. I have learned, however, that if you find the right group, it can be a place to get information, receive empathy, find inspiration, and give encouragement.
A primary reason people join support groups is to get more information about their condition. I joined when I was recently diagnosed and wanted to know more about fibromyalgia and how other people cope. Others in my group have been living with their illness for many years and want to know about new treatments. In both situations, support groups can provide information about your illness. The important thing, though, is to choose a group that gives you helpful, not harmful, information.
Any group can tell you how quickly you’re likely to deteriorate and how much pain you will probably face. The question is, will that information help you?
Instead of being part of a group that will make you depressed, locate a group that focuses on finding beneficial information. For example, members in my group invite guest speakers that discuss topics such as pain management, simple exercise, various therapies, and spiritual issues. The information helps us positively cope with our physical conditions and the changes in our lives.
Empathy is also an important reason people look for a support group. Chronic illness sometimes makes me feel isolated or abnormal. Being part of a group allows me to be with others who understand. Fellow members may not understand my exact situation, but they understand pain, isolation, fear, anger, loss, depression, and many other feelings that come with chronic illness.
As I face daily physical battles, I need to know I am not the only one facing such challenges. Sometimes I feel that “normal” people cannot understand the frustrations that come from having a chronic illness. Support groups help because at the meetings there are others who have the same feelings. The people in the group can listen in a different way. They listen from a standpoint of having been there. My support group friends can acknowledge what I say and then help me see it is possible to work through frustration, hurt, anger, and anything else I am facing.
Support groups are also a source of inspiration. Many times my days drag and fibromyalgia becomes my world. Sometimes I do not feel very hopeful. Going to a group gathering can help me see it is possible to keep going.
For instance, I often battle fatigue and think I accomplish very little in a day. I might go to the meeting feeling very badly that I cannot get more done. While there, I chat with another member and find that he has been in the hospital for two out of the last four weeks. He is still going. He has not given up, and he is even smiling at me! That makes me think, “If he can do it, so can I!” Having a chance to talk with others who face serious challenges offers me new ways to cope with my situation.
Finally, support groups offer people a chance to give to others. We all tend to become myopic at times. We focus on ourselves and the extent of our problems. At a support group meeting we can focus on others.
It is not unusual to attend a meeting and find that someone needs encouragement or a solution to a problem. By reaching out to that person, I turn my focus from myself to someone else. I forget about my own pain as I try to find a way to encourage my friend.
The benefit is twofold. First, the other person benefits from my encouragement. Second, I leave feeling good that I have helped someone else. Many members in my group say that one of our best meetings was when we reached out to a member who had lost her husband.
Why not consider becoming part of a support group? You may be skeptical, but it is worth a try.
If there is not one in your area, why not start one? You could be the person who brings your community a place where those with fibromyalgia can serve others, get inspiration, be encouraged, and learn about living with chronic illness. What a gift to give to others!
Here are some ideas for your support group:
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Jennifer Herman lives in Michigan with her supportive husband, who suggested she write this article in the first place. She and her mom, who also has fibromyalgia, attend support group together. Jennifer thanks her support group friends for making this article possible.