Fibromyalgia Support Groups – Part 2
I also ran and run groups for people who have been treated in my office and no longer have Fibromyalgia. The reason for this is that there is a period of adjustment when a patient goes from being sick for decades to being well. It is a conversion and many times these people would have to re-learn how to become social again, especially if they had isolated themselves for years. These are the easiest groups to run as I generally can’t get in a word. Many are scared of re-entering the world, and many are so excited that I have to continuously remind them to slow down. Actually this might very well be the most difficult task I deal with when treating patients with fibromyalgia. When they have their lives returned, especially in 8 to 12 weeks, they are hyper anxious to start making up for lost time. I remind them that they must take it step by step through my treatment program, but most times they are not hearing me. Still I repeat the same information and warnings. Eventually, most do get it.
In summary, Fibromyalgia support groups can be excellent and they can be disasters. My advice would be to attend a group and if it does not feel right or there is a heaviness of depression and complaining in the air, leave! There are other groups; it’s just a matter of finding the right group, the same as finding the right doctor.
One last word, I have attended groups led by people with Fibromyalgia who had no intention of helping these sufferers. As one support group leader told me: “My life revolves around my support group. If people became healthier, they would have no need to continue attending”. I know this sounds unbelievable, but we do live in a world where people have their own agendas. Therefore it does pay to know who is running the group and what their approach is.
Lastly, be aware as many times groups run by hospitals have their own agendas, having to do with marketing or some even being run by people with very little experience with Fibromyalgia. Just because a doctor is a doctor or a nurse is a nurse, or even a psychologist is a psychologist, this does not mean that they have any more knowledge of Fibromyalgia than the average person on the street. Lorna, one of my patients had told me about support groups she had attended where after leaving, she felt like “killing herself” rhetorically speaking that is.
Before I leave this topic, there is one other issue I’d like to mention. There are many books in the stores about Fibromyalgia and some can be very depressing to read, offering no hope. Be careful what you read and be discriminating. Anybody can write a book; this does not mean that they are proficient in the topic. Before buying the newest book, ask a fibro friend for recommendations. Also be aware of support groups where guest speakers come in with boxes of books, magic potions and lotions and other items which are supposed to offer some great benefit to the fibro sufferer. This is not and should not be what a fibro support group is about.
Support groups can certainly make your lives easier and more manageable, can offer good information and advice and can many times help you to learn tricks and techniques to make your life much more livable. Be discriminating.