Anyone have experience with starting a support group? I hear about all these people who have lyme in my area but I don't know them...
Please give me some direction cause I am not very swift.
Thanks, Kim
Posted by LisaS (Member # 10581) on :
Hi Kim, Im interested in doing the same thing in Wisconsin. I see we both started almost the same thread at the same time.
Let me know if you find out anything interesting. Im curious how to start one too.
Posted by jif (Member # 9215) on :
see pm both of you!
best of luck.
jif
Posted by LisaS (Member # 10581) on :
Jif, I tried to IM you but your mailbox is full. But thanks for the info!!!
Posted by CaliforniaLyme (Member # 7136) on :
Yes- just start one and don't give up*)!
You can drop off flyers at local libraries and they generally have free event lisitngs in newspapers...
As support group facilitator try to stay moderate... don't say speculation as fact to ANYONE in case you get press.
Don't let one person dominate meeting- not even yourself*)!
The way we run ours is to go around and introduce ourselves, then new people get to go and intro themselves and tell story if they want and ask any questions if they want- then everyone else goes around and shares what has been going on with them. If one person goes on too long generally someone will nudge them or hint and we go on to the next person. Ours is 2 hours long but always runs over. From time to time we have a doctor lecture or video or something.
We had one fun night once called supplement night when everyone brought supplements they use and BOY was the table crowded with things... We have also had nice homey potlucks- and lectures by great docs!!!!!! Best wishes, Sarah
Posted by OptiMisTick (Member # 399) on :
[ 25. February 2008, 03:25 AM: Message edited by: OptiMisTick ]
Posted by lou (Member # 81) on :
I think the Lyme Disease Foundation used to have a packet of info on starting and maintaining support groups. You might check their website. Public library might also be a source for general info on such groups, how to facilitate, etc.
There is definitely a skill to running meetings and so forth. I would echo the suggestion to ensure that one person does not dominate meetings. No one besides the facilitator/leader will have the authority to head off such people politely, but if it is not done, then others will just stop coming after a while.
I also think that support group meetings tend to be poorly understood as merely complaining sessions. For this reason, having action components really could help, not just because lyme activism is needed, but as a way of making people feel they are not only victims of medical establishment ignorance/insurance malfeasance. It always makes people feel better if they are doing something to try to change a bad situation, even if it is small things like writing letters. But bigger things can also be accomplished, maybe.
Posted by LisaS (Member # 10581) on :
hi Lou, are you the same Lou that had a heart attack? Im glad to see you back on!! Hope you are doing better.
Posted by lou (Member # 81) on :
Nope, that is Lou B. (for Bachman) who is the longtime moderator of the forum and father of a lymie. I am just another lymie, who should probably change screen name to avoid mix ups like this. But thanks anyway for the kind words, hoping some of our good wishes are getting to the real Lou B.
Posted by bettyg (Member # 6147) on :
also, if you email or call your state's ARTHRITIS org, they have a packet of info on starting support groups! they sent our fibro/chronic fatigue one years ago, and i read it when i took over the leadership for 5 years.
we found if it was 2 hrs.; 1st part be education; 2nd part SUPPORT since what this was all about.
Posted by shazdancer (Member # 1436) on :
Also, check with those in your area who have already started groups. The people in Newtown, Wilton, and Ridgefield are wonderful, and I am sure would be happy to give you some pointers.
Best wishes, Shaz
Posted by CaliforniaLyme (Member # 7136) on :
The LDF also has a wonderful slide show presentation that can be shown to schools!!!