I'm thinking about starting a support group, JPFMS/CFS. Ideas?

Discussion in 'Fibromyalgia Main Forum' started by dani78xo, Feb 25, 2007.

  1. dani78xo

    dani78xo New Member

    Any ideas on how to start an FM/CFS support group, but for adolescents?

    I'm not really sure where to begin, or if there even are JPFMS/CFS sufferers in my area, but I think that it might help.

    The only FM or CFS support group is about 40 minutes away from me, and everyone who goes there is a lot older (no one under late 30's or 40's).

    I've become increasingly aware that having this disorder when you're older and when you're younger are two drastically different situations.

    (ie, young people are known to want to experience new things, yet with FM or CFS, most of the things that I want to try, I can't; young people don't typically get sore--older people do. It's harder to accept the pain if you're so young; being social is a huge aspect of being a teenager, and I haven't been able to see my friends enough since I got sick. I've lost a lot of them.)

    I'm not completely sold on the idea yet, because I don't know if I have the energy to put into it after school, but I do want to explore the idea...I'm just not sure how you even start a support group.

    Has anyone else started one, or known someone who started one?

    Do most support groups typically have experts there every week, like doctors? The groups I went to (migraine and fm) had experts, but I'm not sure if that's how all groups are run.

    And do you just give out discussion topics?

    If I do decide to take this further, I want to have it completely planned out. The migraine group I went to was so disorganized that they ended up just doing introductions every meeting, and barely got any discussion in. It was like sitting in a classroom, listening to a completely monotonous teacher drone on and on about your least favorite subject.

    Any ideas/tips/suggestions/input would be great :].
  2. Cinlou

    Cinlou New Member


    Hi........I do not know or have any suggestions for your support group.....I wanted to bump you, the board is going fast....here goes........BUMP for Dani.....
  3. dani78xo

    dani78xo New Member

    Anyone? :\.
  4. desertlass

    desertlass New Member

    then I might be able to help guide you a little. I ran a chronic illness support group through my church because I had a little training even before I got sick. I also had a lot of good advice from an older Buddhist therapist, and there are also some good books out there on the topic. I miss doing it, but I just became physically unable to continue. I didn't have time to train someone else how to do it before I left, and that's what I would do differently (along with some other things, next time). My ultimate goal was to gather everything that I learned about my experience of leading, for the benefit of others, but that is still in process, like everything else in my life. :)

    I think that if you are able to devote five hours a week, you can probably do it. The meeting itself was an hour and a half minimum, once a week. One hour just never seemed to be enough time for everyone. Two hours was too long. Then it took me some time to prepare in the beginning. So, I am making a rough estimate that it might have taken two hours to think about it, make any handouts, set up, on top of the actual time spent in the group. The extra hour is for the unforeseen.

    If you would like any more advice, I'd be happy to give it to you. I think reaching out to the people in your age group is phenomenal. I am in my thirties, but I was still always the youngest at everything I went to. I can't imagine how alienated you must feel at times. My husband's cousin has CFS, and is in her mid-twenties. This all happened to her gradually, and she feels like she has no social life, and that her prospects for having a family some day aren't very bright. My issues are different because I worry about how to care for kids, my aging parents, and so forth, so she and I can't relate on everything. I think a huge part of coping with this illness is finding people who can relate, and having a place where you feel like you belong and are safe and cared about. I am still looking for a group in my area to attend, but there isn't one, yet. But I won't stop looking.

    Starting and sustaining a support group is physically and emotionally taxing, but I felt purposeful and connected. If you think your body can manage it, then go for it!!


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