I have been contemplating the value of online support groups and social networking sites. Value is not really the right word for it, but I am not sure what the right word is. My first exposure was to a yahoo support group for Fibromyalgia. It did not take me long to realize that it was not the place for me. Each person on there had a signature which listed all of their illnesses and health complaints. The longer the list the more clout you had. People were listing every trivial thing wrong with them in an attempt to make their signatures longer. I was really turned off to it, and it did not … [Read more...]
Score One For the Support Group
It did not take long for my moderator responsibilities for the Fibromyalgia support group to get interesting. This past weekend one member showed her ambition and several others showed their displeasure. I organized the support group through an online social networking site. They are masters at making it easy and organized to start your own group. Before this weekend, the only requirement to join my group was to live locally and be suffering from Fibromyalgia and/or chronic pain/illness. Of the 23 members, 22 joined because they were genuinely looking for information, coping skills, community … [Read more...]
The National Fibromyalgia Association Pledge to Care
I have just recently become a member of the National Fibromyalgia Association. The NFA is a 501(c) 3 nonprofit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. Their website is full of resources and articles about Fibromyalgia, as well as information on programs and regional support groups. In January of this year they began a campaign called Pledge to Care. The Pledge to Care is a way for family members, friends, and healthcare providers to show their support to persons with Fibromyalgia by making a … [Read more...]
Fibromyalgia Support Group
Maybe my therapist was right, maybe I am a caretaker by nature. That would help explain why I have taken on the responsibility of organizing a local support group for people with Fibromyalgia and chronic pain. I have been interested in starting or joining a Fibromyalgia support group for some time. Partly it is for completely selfish reasons. I want a community I can reach out to; a group that understands how I am feeling without my needing to explain; a group I can turn to for compassion and camaraderie. But mostly it is that I want to help others find hope. I became organizer of the … [Read more...]