Question:
One group I belonged to usually had a speaker. The speakers weren’t necessarily doctors, though sometimes they were. More often, it was someone with lupus or a family member. Usually, the speaker addressed some topic. The topic would be pulished in the newsletter that went out so that people would know what to expect. Of course, there were times when there was no speaker available. At those meetings, we would usually just talk. As with your group, we had a small core group that came regularly. There were others who came when they could, and some others who only showed up for certain things. Personally, I think you’re being too hard on yourself. You might gain a few helpful suggestions here. Otherwise, I think you just have to do the best you can and see what develops. Sandra
Response:
"KCat" <kcdoc…@ghg.net> wrote in message
news:de93mt89krtnccqs18d05dvh6s21qf7hhv@4ax.com… – Hide quoted text — Show quoted text -> Hi all. > this is not directly relevant to the group but I wanted to write about > it now that my migraine is gone (May I hear a mighty "AMEN!") > I attended a seminar last weekend that is designed to start > facilitators off on the right foot for support/self-help groups of any > kind. I found it very helpful in many ways. I connected up with one > person who is interested in starting a sort of "grass roots" campaign > to bring awareness to people about Self-Injury (obviously this is not > SLE related). So looks like I’ll be splitting my support resources > further – but I’m excited about it because I have friends coping with > this issue and family and there’s such a stigma to it and so little > understanding. > Anyway – there was one problem – I came away feeling like I am not > doing what is best for my RL support group. > My response, was to let my migraine take control and I didn’t make any > reminder calls this month at all. At first I felt guilty – then I > felt angry with the other members of the group. I know they have brain > fog but how hard is it to take that little card they get in the mail > every month and put it on the refridgerator or the bathroom mirror or > wherever it would serve best as a reminder? I know that with CNS > lupus sometimes that actually can be quite hard. but most of our > members don’t have CNS symptoms and many of them really don’t have > severe symptoms at all. Now they all have lives and I’m not saying > they should be at every meeting – that would be hypocritical as I can > not make every meeting. But I was thinking "why do they really need > me to call them every month to remind them?" The key to developing > this sort of frustration was a comment made in the training class a > couple of times: "A good facilitator doesn’t "run" the group but > guides the group into being able to "run itself". When I took on the > co-fac responsibility I tried hard (too hard?) to get the group > involved in decisions re: how we would handle the meetings, who would > like to see what in terms of a speaker now and then? Activities they > might be interested in? Any who would like to give presentations > about something they know that can be of help to the group and so on. > I got blank stares and then everyone just wanted to talk about their > symptom of the month. It felt like our previous fac was a sort of > "authority figure" (hospital chaplain) while I am "just another lupie" > and therefore my attempts to guide the group were not to be taken > seriously. > Basically – until I and my co-fac "took over" this was an upbeat group > with consistently "large" attendance (10 or more). Now it’s lucky if > we have six people in the room except for the neurologist I brought in > – everyone wanted to be there for that one… My LFA contact assures > me that a big group is not necessarily a good group and that even if > you have only one person attend you’re making a difference for that > one person. But I can’t fight my feeling that "quantity is quality" > on this one – that people would attend if they felt the group really > offered them something they could use. > well, then last night it occurred to me that *I* was handling the > phone calls incorrectly. That rather than using them to remind people > of the meeting every month – I should be making those calls all month > long to keep the group knitted. That by only calling at a specific > time I was giving too much time between meetings for people to lose > interest and emotional connection to others. And in fact, that I need > to let people "remember" for themselves about the meeting. > that wasn’t discussed in the fac training and I think it’s something I > should express to the folks that ran the meeting. We talked about > ways to relate to each other despite cultural differences, we talked > about methods of getting people involved and making sure members were > getting what they needed out of the group. But we didn’t talk about > how to provide cohesion. > anyway – this is just a rant/vent of sorts. It’s been weighing on my > mind. Rant 2 to follow. > TFL,
AHHHHHMEEEEEN! What about a "phone tree" every week to get people involved? -=JR=- — The children of Israel wandered around the desert for 40 years. Even in biblical times, men wouldn’t ask for directions.
Response:
AMEN, AMEM. There,you got too. Seriously, I’m glad it’s gone. BJ "KCat" <kcdoc…@ghg.net> wrote in message
news:de93mt89krtnccqs18d05dvh6s21qf7hhv@4ax.com… – Hide quoted text — Show quoted text -> Hi all. > this is not directly relevant to the group but I wanted to write about > it now that my migraine is gone (May I hear a mighty "AMEN!") > I attended a seminar last weekend that is designed to start > facilitators off on the right foot for support/self-help groups of any > kind. I found it very helpful in many ways. I connected up with one > person who is interested in starting a sort of "grass roots" campaign > to bring awareness to people about Self-Injury (obviously this is not > SLE related). So looks like I’ll be splitting my support resources > further – but I’m excited about it because I have friends coping with > this issue and family and there’s such a stigma to it and so little > understanding. > Anyway – there was one problem – I came away feeling like I am not > doing what is best for my RL support group. > My response, was to let my migraine take control and I didn’t make any > reminder calls this month at all. At first I felt guilty – then I > felt angry with the other members of the group. I know they have brain > fog but how hard is it to take that little card they get in the mail > every month and put it on the refridgerator or the bathroom mirror or > wherever it would serve best as a reminder? I know that with CNS > lupus sometimes that actually can be quite hard. but most of our > members don’t have CNS symptoms and many of them really don’t have > severe symptoms at all. Now they all have lives and I’m not saying > they should be at every meeting – that would be hypocritical as I can > not make every meeting. But I was thinking "why do they really need > me to call them every month to remind them?" The key to developing > this sort of frustration was a comment made in the training class a > couple of times: "A good facilitator doesn’t "run" the group but > guides the group into being able to "run itself". When I took on the > co-fac responsibility I tried hard (too hard?) to get the group > involved in decisions re: how we would handle the meetings, who would > like to see what in terms of a speaker now and then? Activities they > might be interested in? Any who would like to give presentations > about something they know that can be of help to the group and so on. > I got blank stares and then everyone just wanted to talk about their > symptom of the month. It felt like our previous fac was a sort of > "authority figure" (hospital chaplain) while I am "just another lupie" > and therefore my attempts to guide the group were not to be taken > seriously. > Basically – until I and my co-fac "took over" this was an upbeat group > with consistently "large" attendance (10 or more). Now it’s lucky if > we have six people in the room except for the neurologist I brought in > – everyone wanted to be there for that one… My LFA contact assures > me that a big group is not necessarily a good group and that even if > you have only one person attend you’re making a difference for that > one person. But I can’t fight my feeling that "quantity is quality" > on this one – that people would attend if they felt the group really > offered them something they could use. > well, then last night it occurred to me that *I* was handling the > phone calls incorrectly. That rather than using them to remind people > of the meeting every month – I should be making those calls all month > long to keep the group knitted. That by only calling at a specific > time I was giving too much time between meetings for people to lose > interest and emotional connection to others. And in fact, that I need > to let people "remember" for themselves about the meeting. > that wasn’t discussed in the fac training and I think it’s something I > should express to the folks that ran the meeting. We talked about > ways to relate to each other despite cultural differences, we talked > about methods of getting people involved and making sure members were > getting what they needed out of the group. But we didn’t talk about > how to provide cohesion. > anyway – this is just a rant/vent of sorts. It’s been weighing on my > mind. Rant 2 to follow. > TFL, > *********************************** > KCat – I am not a medical professional. The contents of this post are
based soley on my experiences and opinions – Hide quoted text — Show quoted text -> http://www.ghg.net/schwerpt/mypage.htm > http://www.ghg.net/schwerpt/aslfaq20.htm > ("`-”-/").___..–”"`-._ > (`6_ 6 ) `-. ( ).`-.__.’`) > (_Y_.)’ ._ ) `._ `. “-..-” > _..`–’_..-_/ /–’_.’ ,’ > (()),-” (()),’ (((.-’
Response:
Hi all. this is not directly relevant to the group but I wanted to write about it now that my migraine is gone (May I hear a mighty "AMEN!") I attended a seminar last weekend that is designed to start facilitators off on the right foot for support/self-help groups of any kind. I found it very helpful in many ways. I connected up with one person who is interested in starting a sort of "grass roots" campaign to bring awareness to people about Self-Injury (obviously this is not SLE related). So looks like I’ll be splitting my support resources further – but I’m excited about it because I have friends coping with this issue and family and there’s such a stigma to it and so little understanding. Anyway – there was one problem – I came away feeling like I am not doing what is best for my RL support group. My response, was to let my migraine take control and I didn’t make any reminder calls this month at all. At first I felt guilty – then I felt angry with the other members of the group. I know they have brain fog but how hard is it to take that little card they get in the mail every month and put it on the refridgerator or the bathroom mirror or wherever it would serve best as a reminder? I know that with CNS lupus sometimes that actually can be quite hard. but most of our members don’t have CNS symptoms and many of them really don’t have severe symptoms at all. Now they all have lives and I’m not saying they should be at every meeting – that would be hypocritical as I can not make every meeting. But I was thinking "why do they really need me to call them every month to remind them?" The key to developing this sort of frustration was a comment made in the training class a couple of times: "A good facilitator doesn’t "run" the group but guides the group into being able to "run itself". When I took on the co-fac responsibility I tried hard (too hard?) to get the group involved in decisions re: how we would handle the meetings, who would like to see what in terms of a speaker now and then? Activities they might be interested in? Any who would like to give presentations about something they know that can be of help to the group and so on. I got blank stares and then everyone just wanted to talk about their symptom of the month. It felt like our previous fac was a sort of "authority figure" (hospital chaplain) while I am "just another lupie" and therefore my attempts to guide the group were not to be taken seriously. Basically – until I and my co-fac "took over" this was an upbeat group with consistently "large" attendance (10 or more). Now it’s lucky if we have six people in the room except for the neurologist I brought in – everyone wanted to be there for that one… My LFA contact assures me that a big group is not necessarily a good group and that even if you have only one person attend you’re making a difference for that one person. But I can’t fight my feeling that "quantity is quality" on this one – that people would attend if they felt the group really offered them something they could use. well, then last night it occurred to me that *I* was handling the phone calls incorrectly. That rather than using them to remind people of the meeting every month – I should be making those calls all month long to keep the group knitted. That by only calling at a specific time I was giving too much time between meetings for people to lose interest and emotional connection to others. And in fact, that I need to let people "remember" for themselves about the meeting. that wasn’t discussed in the fac training and I think it’s something I should express to the folks that ran the meeting. We talked about ways to relate to each other despite cultural differences, we talked about methods of getting people involved and making sure members were getting what they needed out of the group. But we didn’t talk about how to provide cohesion. anyway – this is just a rant/vent of sorts. It’s been weighing on my mind. Rant 2 to follow. TFL, *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
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