Topic: Frustrated. Many no-shows at Lyme Support meeting today.
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I've been putting forth so much effort to get folks involved in the support group. I email, I post, I call. Yet they still no-show. The main person who came on board in May to start the group was so "gun-hoe" about it. Said she wants to be involved, wants to help plan, etc etc. Yet this person has not come through.
Not only has she not come through, she doesn't return calls, or if she does respond, it's a short text. I've even had NO acknowledgement from her. So I'm not waisting anymore time. I'm not continuing to email the one's who don't respond. I have only 1 faithful member who has been there every meeting. I told him tonight "Well, it looks like we're the only one's". He said he was going all the way, he wasn't pulling back. He's just as mad as I am!
So that's the scoop. We're planning a float for the fair parade in Sept. We're gonna drape it with lime green and staple home-made ticks all over it. Here't to the faithful87!
(And no, the person who was supposed to be "gun-ho" is not in treatment and is well now)
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey dumpy,
Sorry you are having a slow time of it at the meetings. If it makes you feel better, this is quite common. Frustrating as git-out, no doubt, but quite common.
It is almost universal too that those who say they want to help and seem anxious to go, go, go, often are no-shows and that is worse than having no one offering to help at all.
I wish I had a nickel for every person that I've spent hours, weeks and even months with who said they wanted to do this or that and then came up with excuses not to follow through.
And I hear this complaint regularly from other group leaders.
In fact, just this past week I had a call from an educator and she was asking me why these people do this? Why do they commit to something and then dismiss it as if it were not a big deal?
So it is NOT you! Please know that.
To avoid the frustration, maybe you can re-think the effectiveness of having monthly meetings for now. The work involved, to do it right, is, as you know, incredible and very draining.
Some groups have an annual meeting now. Some have 2 times a year only.
Some go to fairs, conventions, meetings and other gatherings where the people are, rather than trying to bring individual people to them.
For years I had meetings, but I got to ill to continue, so I only did "by request meetings".
That turned out to be VERY successful at the time, however, it was too successful and I was too sick to keep up with the hundreds of requests I was getting each year.
Soooooooooo... I re-thought my plans and tried something else, and for me something new.
I realized that from the comfort of my own home, and dressed in my nightgown, I could reach many more people with a well placed article on Lyme disease in the newspapers.
So I started researching and then wrote one. It took several months to complete, but I did it. And to my surprise, it was published.
Since then I've written many more, as many as I can get done. And I don't even have to leave the house to reach people.
At the time I had no typing skills at all, no computer to do the research, and I wasn't a "writer" or reporter.
My point is.... you knew I had one... HA!....
It is very nobel to do what you are doing. You are a rare bird, one of a kind. But please don't let yourself get so frustrated you don't enjoy what you are doing.
We NEED you out there making waves and educating folks. But we don't want to see you so annoyed you could come here and jump out of my 2nd story window.... something I've threatened to do many time before out of sheer frustration like you are feeling!
I LOVE the float idea too! Take pictures please! Would love to see it!
posted
Hi - I too can appreciate all the effort you're putting in here, with little return - if you're at all interested in finding other ways to connect with folks, maybe to try a little experimenting to see what kind of response you get -
For example, I have found that pet owners are fairly receptive to info about the situation and how to protect their pets and themselves -
In doing any public outreach, people will invariably tell you they are ill or know someone who is, and in that way, you might also be able to grow the support group.
Posts: 13116 | From San Francisco | Registered: May 2006
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Hey, Garbagedump. I am not totally up on your situation. But it takes a long time to get a support group off the ground. I started a group with another person about 7 years ago. For the first 9 months, it was just the two of us plus one new person every meeting. Then all of a sudden it blossomed. We had 8 people show in one meeting. Those people basically became the core group. And we had another 4-5 people that could attend when they felt up to driving. Today, I am no longer near the group, but it has grown to 18 people per session and they are looking for a larger facility to hold the meeting.
Bottom line, it takes time. If it has already been a long time, then perhaps some of the suggestions above will work for you instead of doing a meeting.
Best, Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Thanks for all the encouragement from you guys. I've only recently gotten my hand in this so I guess I need to give it time. I had more people call me from the article that was published about me on the cover of a local health magazine. From that, I got names and numbers of those who said they were interested.
I had a television interview along with another person (who I waited on to come through). The person went on the air with me, went down and picked up both copies of the interview, and I never saw it. Now the person has bugged out, literally ignoring any email or call. So I'm washing my hands of it.
I do have one loyal member. He is fighting mad, just like I am. He's able to do things to help, he still works. Plus he always shows up and I know I can count on him. If it's just us building the float for the parade, so be it. But my reputation is building around here.
My pastor told me that it will take time and to not give up because what we are trying to do is a service to the community. He's been most helpful allowing us to use the church fellowship hall. These are great suggestions, thanks so much.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I can understand your frustration. One thing to consider is that many ppl with lyme *think* they will be up to doing something but when the time comes they feel too ill to follow through.
I'm sure that doesn't apply to everyone but it is the nature of the illness. We never know how we are going to feel from one day to the next.
Thanks for trying to help those in need.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I find that it does grow over time, as people begin to learn what you are doing - so just give it some time, and stay the course!
Posts: 13116 | From San Francisco | Registered: May 2006
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
July / August are difficult months to have meetings. Vacations and too much to do while its still daylight.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
If support group meetings do not work, then find some other way to contribute. My personal opinion is that the people who say it is too depressing to continue to go to meetings and hear the same sad stories.....maybe action groups would work better, designed around specific things. Then it is more positive?
But if there are no support/action groups it may be harder to organize things that would help change our situation for the better.
The problem is that when people get better, they move on and when they are really sick, they can't do much. And not everyone wants to pay back on the help they have gotten in their lyme journey.
Best of luck. Hope you find the course that works for you and accomplishes something.
Posts: 8430 | From Not available | Registered: Oct 2000
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have been co moderating a group for about 4 years.
Its pretty tiring.
But I agree, a lot of people with lyme have great intentions of going to meetings or other things, but then they feel too sick or tired.
it comes with the territory.
The other thing that I find frustrating (maybe its just me)
but when the same people come for months and even years, and you tell them the SAME advice over and over and over, and they dont want to listen and follow your advice and yet they keep complaining over and over about the same things and you tell them what they need to do.
just simply telling them the usual doctors will not be able to help you, try these different doctors and they dont listen.
I find that incredibly frustrating and makes me not want to help becaus ethey dont seem to want to help themselves. wether thats true or not IDK, but it is frustrating.
Posts: 3905 | From USA | Registered: May 2007
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posted
Hey, merrygirl, what you describe is not limited to lyme. I have family members who will do every imaginable medical thing that is suggested to them by some doc or other, but not the one thing that might really help them. Deaf to good advice and at some point you just have to recognize that if they will not change their actions, they will not change the outcome. Maybe it is time to just say to those people that you have given them the best advice you have and since they have not taken it and continue to suffer, that you can think of nothing else you can do for them. Just cut them loose. Hard to do. And even harder to do if they are in your own family. I am not talking about lyme in connection with my family members.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
If I could get enough members, I'd hold the meetings 'group therapy' style making it more a 'group' than a meeting. I'd give everyone a chance to talk about what is bothering them, have rules....just like traditional group therapy. There has to be some structure. So far, it's just been folks getting together around a table and talking about what they've been doing.
We actually cut out tick patterns on Saturday. Of the four people who came (2 lymies, 2 spouses) it was very pleasant. WE all laughed and joked, too.
The folks who I've regularly contacted or tried to contact and have not responded, I'll just leave them alone for now. Not all are in treatment or still sick. I guess I'm disappointed and have my feelings hurt a bit by the main person who said they wanted to start this thing with me, but has never followed up. That bothers me.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Garby, I can understand your frustration. You can put so much energy (that we don't have much of) into trying to help others and then to have others not be able to do their part, hurts.
Rene(lymenet member) and myself have been down this road. We're going at it again.
Alot has changed in this part of the country with lyme awareness because of Under Our Skin and many more local people are now being dx with Lyme.
Rene and I will meet at our support group location tomorrow to finalize our 2nd attempt at forming a support group. Our date is set in stone for Sept 15th @ 1pm in Louisville, KY.
Rene and I both think the time is right and we can do this. We hope our ill lyme friends can also attend and participate.
Thanks for sharing your thoughts everyone. Don't give up. We know it's needed. Some people just can't figure out how to help themselves and try to take charge of their health and life.
One must take charge of this illness....or it will take you if don't.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Wow lou, I could have written your post.
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Please keep in mind that the internet has changed everything. Twenty years ago, real in-person support groups were the only places to get information about this disease. Today, everyone is online. Lymies may spend hours and hours online learning about their disease, as well as participating in on-line support groups.
As someone noted, people who have gotten well sometimes lose interest.
And most importantly, NINE OUT OF TEN people with Lyme don't even know they have it!!
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I'm one of the few that HAS NOT lost interest after getting well. I just can't let it go. I'm so thankful that I was able to get on top of it early enough so that I got well. If it wasn't for websites like Lymenet and others, I'd still be sick.
I know it will take time to build a real support group.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
but see if you are well, you are probably feeling a hell of a lot better than those who truly need your support group. Try to remember what it was like with pain and fatigue and all that.
Posts: 3905 | From USA | Registered: May 2007
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