View Full Version : Anyone have support group ideas & info?
10-26-2004, 04:53 PM
I am starting a Lupus support group in my area in December....just wondering if anybody goes to one, what kind of things they've liked and disliked, and any topics/ideas for me. I think I'll be lone-dogging it for a while on the facilitator thing, so any suggestions would be greatly appreciated!
Thanks, everyone! :wink:
11-02-2004, 12:05 PM
I am so pleased that you are starting a support group. It takes a lot of dedication to start a group of that type and I commend you.
I have attended support groups and there were two things that I truly did not like:
1. A group that essentially turns into pity parties. By that, I mean, they never discussed how to deal with certain symptoms, what to expect from medications, how to deal with doctors, what new treatments were out there, where to find help locally, etc. Everyone just showed up and talked about how miserable their lives were and how everyone else was to blame for the misery in their lives. It was always depressing and I always walked away feeling worse than I did when I came.
2. A group that deals with nothing at all...except to become a social gathering, party planners, and/or a gossip center. I left their feeling empty and angry.
What I wanted and what I needed was information, answers to my questions, some support and a place to know that I was not suffering alone.
I hope that this helps you! Once again, I commend you for what you are doing and I wish you the very best!
Peace and Blessings
11-11-2004, 10:36 PM
Thanks, Saysusie, for the info and for sharing your experiences, as I've only been to one support group meeting in another state, with my sister before I had Lupus, and it was a while ago.
I will keep your ideas in mind and hope others have some more ideas/info to share with me?
11-18-2004, 03:37 PM
I am a member of a support group and I do have some do and don't rules that I like to follow.
I do not like when only one person dominated the entire conversation.
I do not like doctor bashing or swaying someone from what their doctor recommends.
I do not like the group that only complains and doesn't want to learn.
I do like supporting each other and helping other group members get to the meetings.
I do like passing books around for others to read or having a book club as part of it. There are some fabulous motivational books or good stories out there or educational books.
I do like including the local Lupus Association or Society branch, especially getting the latest information from them.
I do like including videos and pamphlets from the local Lupus chapter.
I do like also having experts from the community come in with alternative therapy options.
I do really like talking about the treatments that works for them and having them bring it to their doctor.
A support group is just that, to support each other, improve quality of life and inform/educate the people in the group.
A support group is a fabulous outlet for people and also a release for the family because they have someone other then their spouse/partner/relative to talk to and they still feel supported.
I found because I have that outlet, I don't feel the need to talk about it all at home as much. My husband doesn't mind at all, but I like to talk about more pleasant topics as well.
11-30-2004, 10:40 PM
JenHa55 - thank you so much for the info! We are going to start to try it this Saturday. Wish me luck!
12-06-2004, 12:44 PM
Just thought I'd let you know that the first meeting went very well - 4 people came, which I thought was great for our very small community and the fact that we're in the holiday season. One woman was newly diagnosed, and another had been feeling isolated. The third was a great supporter, and the fourth, a boyfriend of one of the other women!
I was really happy and wanted to thank you for your input.
12-07-2004, 07:29 AM
Hooray for your first group, which was successful. Once again, I want to commend you for taking the time and dedication to provide such a needed service.
Keep us posted about your success!
Peace and Blessings
I have just joined today and saw this thread. although I am in England, I saw the same need for a support group in our area. I decided to start one and today at our first meeting, I became chairman.. I agree with what was said it must be constructive not destructive. we are going to organise a monthly meeting in the evening to incorporate the workers and try to get interesting speakers both medical and social/fun. and as our county is spread out we aim to have a social meet in each corner covering the month. We are fun raising as unfortunately everything requires money and trying to raise awareness. I will watch how yours goes with interest and hope to swap ideas.
12-10-2004, 04:35 PM
Val - I wish you the very best with your support groups in England!
My cousin is currently living in Wales, and I will be there in the Spring for her wedding. It will be my first trip to Europe and I am very excited!
Again, good luck!
Hope you enjoy England I'm right in the centre.
01-28-2005, 07:05 AM
Hello, I have recently been diagnosed with Systemic Lupus with little prior knowledge of the disease. Unfortunately it is a disease that few people know a whole lot about.
Therefore I would like to be part of anything that will add awareness. As an artist, illustrator I have been working on a series of illustrations titled genuine (real people, real moments) capturing how people with Lupus can lead normal happy lives. We can still do anything!
I am utilize my art works at fundraising events and donating a portion of all proceeds to lupus. I am doing art work of other families with Lupus. I am looking for photos of their family genuine special moments and we can capture moments of real life people, leading real normal lives despite the fact that they have lupus. It also will demonstrate an excellent means of therapy.....art!
I think it is a good way to get people involved and interested.
If you would like to submit your photos that would be excellent to help. I'm hoping to capture unposed photos of real moments, like families laughing, playing games, fishing, biking, birthdays whatever. Much appreciated!
Please email me your genuine moments captured on photos or info to email@example.com
Thank you, Jacquie
01-28-2005, 11:08 PM
hey! thumbs up to you for starting a group!
in 1994 when i first went to a local lupus chapter, i was disappointed that he only things that group was open to was talking about prednisone and lawyers. i brought up some emotional topics and it fell like a lead balloon. later i wnt back adn broght up some alternaitv medicine i had discovered and had good success with adn was cut off and accused of being off topic, so i decied not to go back and started my own group.
we stayed solution oriented but also people were free to talk about how things were going with them. we met regularly for 6 months and i got a lot out of it. there wre 4 of us, and we all showed every time, adn those meetings meant a lot to me. maybe 4 wasn't a big turnout but it was exactly what i neede at that time- someone to be "real" with who knew exactly what i was going through.
folks brought in books about yoga, the grief process, i talked about teh alternative medicine i was doing. it was great.
i got to doing so well i didn't need meetings anymore. i think we kind of all got what we needed at that timeadn disbanded.
i had a huge crisis 8 years later and started gogn to the locl lupus chapter in my new area- in west palm beach adn i liked this lupus local chapter much better. they were far moe open minded than the first one i went ot in South Carolina.
in teh west palm group, they ahve shown a movie, had someone lead us througha visualiztion, had a social around christmas. i only went to a few- it was very out fo the way for me, adn then i moved further away fromt eh meeting- but i was encouraged by th open midedness. and this meeting had about a dozen members.
i think it na be a very valuable place.
the one rule in west palm was not to mention doctors by name, whether you were saying good or bad things about them. not inside the meeting anyhow :)
and the leader often solicited suggetions on what people wanted to have at the future meetings. that was nice. it kept it "our" meetings and not something handed down from an authority figure- very democratic.
sof or me- open exchange of ideas, freedom to be real without sinking into a pity party, and keeping the meetings a good length like 60-90 minutes.