Support Groups

[Scotty87]

Hey everyone. 

I have been thinking a lot about going to support groups for HIV/aids in my area.  I was never really sure about the idea, but I keep getting depressed on and off a lot lately and I think that it would help if I could meet and talk with other people who are positive. 

Today I called the South Mississippi Aids Task Force, a local group that deals with most all things related to the subject.  One of the things that they are supposed to offer are support groups.  I made the call to find out more information and the person on the phone informed me that they currently don't have any dates set up for them because they have been dealing with Bid for Life and apparently didn't raise a lot of money this year. 

Bid For Life is an annual event in which they have items donated and they auction the items to raise money for the task force.  This is my first year with aids.  My family owns a business and I was fortunate enough to have my mother's support to donate and help sponsor the event this year.  Hopefully I misunderstood, but it is a little upsetting to have donated and seen others donate and then find out that something like a support group isn’t being kept up with because they are too busy or aren’t allocating what should be little funding for a couple of meetings each month. 

Just to be clear I have never attended a support group.  Not just for HIV/Aids, but any type of support group.  Because of this, I have no personal experience as to what occurs at one of them.  That said, I have been questioning whether or not I could go about starting one of my own.  I feel that this is something I could really benefit from, and I am sure that there would be a demand for it in my area if done the right way.

 I would appreciate any information you all may have regarding support groups - Any comments good or bad.  Have you ever started one?  What might be involved with starting one or How would you go about starting one?  Do you find them to be helpful or a waste of time? What do you look for when choosing one?  Can I even start one?

I tried to find answers on how to start one online, but I wasn’t having a lot of luck.  Hopefully some of you have some advice or opinions on the subject. 

Thanks,
Scott

[Joe K]

Hey Scott,

I will be happy to share with you, my experience with support groups and I am impressed that you want to start one. I will be honest, they can be a lot of work, but the rewards are endless. I've been going to groups for almost 30 years and most groups are structured around a certain core, whether it be HIV education, pozzie support, etc. So your first decision is to pick what type of group you want and then write down, why you think it is a good idea. In Florida, we had two really great groups. One was strictly HIV 101, and members came from the main group, or started there, because throwing a newly poz, in the middle of Long Term Survivors, can be a truly harrowing experience for them. This introduction group, met on a separate night, from the main group and it was run by two doctors, so the science was the latest, presented in simple form to help newbies learn.

There are also groups that target a segment of the HIV community and they generally consist of new comers groups or groups for folks who have been poz for a while. These types of groups can be very good, but you need to have a couple of committed facilitators and you need to plan topics for each meeting. From my experience, if you want to provide medical information, you will need trained facilitators, especially working with an ASO. But if you want a group, where folks can just talk, then you can do that with a little practice.

We also had a group, called Positive Attitudes that was for pozzies, but no talk of HIV was encouraged. The purpose of the group was not so we could bitch and moan, rather it was committed to the fact that we were not dead and life is worth living. We had a weekly meeting, after which about half of us would go out for dinner. We had events, pool parties, bar nights, picnics, you name it, just to be together and have fun. There were a couple of us who facilitated the group and we would ask for members to take charge of the group for a meeting. We surveyed our members, very simply, on what topics were of interest to them. We encouraged members to bring topics of interest and by doing all of that, we kept the members engaged.

I would suggest you do some research and talk with your local ASOs about what kind of need they see for groups. If they have a real need, there is no reason that they will not give you space for meetings and even help with promotion. However, before you can do any of that, you really have to decide on what type of group you want. Our group was for poz men only, no negative members allowed. The only exception was if a member had a negative partner, that partner could come to two meetings, but no more. The group decided they had enough to deal with being poz, without the added issues negative members would have.

Another idea would be for you to promote a night each week, where you will be discussing starting a group. That is why it is imperative that you work with anyone who can get your message out. You also need to understand that starting a group can be very slow going, so don't get discouraged if it takes a while for your group to get really started.

Scott, what you are doing is incredibly selfless and on behalf of your HIV community, I thank you.

[Granny60]

I have been to a couple types of support groups. 1st type,  they have a lecturer come in and hammer at you to use condoms, take your meds, tell you why they are always cutting programs,  yadda, yadda, and bore people till they don't want to come back again.  The second type of support group that many of us really enjoy, is like a pot luck supper. we all decide what our dinner theme will be the next meet. ( chicken and dumplings,  chili,  spaghetti ,  whatever). We meet in a room at a community building so there are no room fees. We just sit around and visit,  bullshit, talk about the latest news in everyone's life, gossip,  answer questions anyone asks and generally have a good time with our new "unique" group of friends. Nothing formal,  no Robert's rules of order. Seems like when anyone has a problem, there is always someone with the right answer or whatever they need to to fix it ( used couch to give away,med side affects,   know where to find a cheap car for cash.....).  A great time is had by all and we have started meeting 2 times per month now just to get together. Many of us see each other a couple times a week just to hang out or help out. You get to compare some really good recipes at these little potlucks. (You should try chili made from Buffalo meat some time).  It is really nice to see how much better the informal groups work. Many bring their Neg partners, There are gays and straights all tied together  with our unique bond,  but we don't dwell on  what ties us together. Sometimes someone has a question about a med or a doctor or test and their is usually  someone with an answer, but the best part is we are just  having fun visiting. We all live this freakin' illness 24/7/365 but is really great to have a "normal" conversation with someone where HIV isn't the issue circling your head like a mosquito about to pounce. Bottom line is a "social" group seems to work best. You still get answers if you ask a question, but no-one judges you. Check around to see what is available for a private place to meet in you area, then tell you case manager that you would like to start a group and ask her to send an email to everyone that she has on her client list with a date and time.  You might need to have a sponsor pay for a pizza party first round to get things started, but it is well worth it for everyone.  

[HARLEY_B]

 Granny's second group description sounds much better than the first. Wish we had some sort of support group in my area for just such a thing. I know there are others out there in my situation but no group get-togethers that I'm aware of and no one that I know personally unfortunately.

[weasel]

 
         Hi all ,
                   Scotty I hope you are able to get your Caseworker to  use her JOB   and the dept's.

               Money to form  a nice group !

               When Bob and I moved to  Possum Village (  pop 57 )       There was  NO  support

               group  in the Town  40  miles away  !  It took ME   months to get  the Caseworker

                to submit  to starting a group !

                 This group worked   fairly  well for the first couple years , Then turned  into a

                   MEDICALLY  REDUNDANT MESS 

                  In an effort to disband THEY SENT OUT HIV/AIDS  PAMPHLET's  to EVERYONE !

                  I got throw out of Ryan White over that !  OH ? , THAT is another storey ,sorry 

                  *************
                   The Social group  with Pot-Luck dinner is a wonderful group  . Bob and I try to get there

                   once a month !  These men and Woman have become  part of our family !

                   It is worth the 65 mile drive ,each way ! to have the support I need 

                   We  eat  , we talk , we help each other out . 

                  Bob and I have had a few of the group members over for dinner  and just to hang out .

                   We sometime go for lunch or dinner with some of the group members , some of witch live

                   in littler towns than we do 

                   **********

                   TONIGHT  the NEW group will start in Tulip Town  . I AM hoping with a new Caseworker

                   That her  youth  and zest for her new job  will bring life back into this HORROR show of a

                   group .

                              I wish you well with groups , they ARE very helpful indeedy ,
         
                                                                                            Weasel


               

[Granny60]

Harley,  ask your  case manager or someone at your local  social services office about a place to meet and then have your case manager send a letter to their client list about the  meet. Everyone's name is supposed to be confidential, so  you need to enlist the help of someone who has a list of all our "Peoples"  in your area.  They might mention that if you come to the meeting other people in your same situation may learn who you are, and that confidentiality is to be respected,  but everyone will be in the same boat, so the barrier of HIV stigma  will not be an issue to anyone.  The meets are really a great chance to socialize for those of us who have no social life anymore.  Wease,  I hope the new  group goes great!  I know it will be closer for you.  Say howdy to Bob and I hope he feels better soon.  See you in 2 weeks buddy!

[Scotty87]

Thank you guys so much for your time and feedback!  This helps me a lot and has helped me to know which direction I would like this support group to go.   

I haven't told my partner about this idea of wanting to start a support group, but I hope that he is okay with it.  I know the idea of him not always being able to be there when I am around a bunch of other people may not settle well with him.  I'm just nervous to talk to him about it for some reason.

I'll try to remember to let you all know how it goes.  Thanks again -

Scott

[Granny60]

Scott, you will be surprised how well your partner will fit in. Pozies like to have the friendship of non pozies who don't judge them to hell and back.  There are several Poz/Non poz couples in our group and we all have a great time together. Bring him along, after all he is your own personal supporter and understands, right? Sometimes it helps our non infected friends to understand what we deal with when they can talk about things with other infected people.  It's all just about being friends. Friends are what keeps the world going around so it doesn't jerk to a stop and sling us off the planet. The world is full of wonderful people. The nice thing about potluck style suppers, is that even the poorest people usually have access to food assistance so bringing a pot of chili or a pie doesn't put a financial burden on them. Everyone is on the same playing field when you don't have to worry about the price of admission. Good luck buddy! Let us know how it goes. 

[Miss Philicia]

Actually in all of the support groups I've ever gone to negative partners have not been allowed to attend, out of sensitivity to other positive people's concern about privacy.

[Granny60]

Actually in all of the support groups I've ever gone to negative partners have not been allowed to attend, out of sensitivity to other positive people's concern about privacy.

Everyone has to understand the right to privacy, but I assure you, sometimes the  Neg partner needs the support group too. You would be surprised how many questions I have been asked by Negative partners that only want to be more informed so they can be there for their positive partner.  If the uninfected were not allowed to come to our group, the attendance would be reduced by 25% and yes I just did a head count and figured it on the calculator. Those are real numbers.  What better way to promote understanding and end the stigma? If we can't go public, at least we can start with the negative partners of our pos. friends so people can see that we are still real ordinary people with a little extra flavoring in the tonic.

[Miss Philicia]

HIV-negative partners are not "forever" - it's a breach of confidentiality for them to be there, when the next month they might not be the HIV-positive person's partner.  Other members of the group don't usually wish to be exposed to that possibility later outside of the group.

As for what you do in a rural support group without a lot of membership I guess it's just a different scenario, but like I said I've been in many support group in two huge cities over a span of almost two decades and that's how it's been done in every single group setting.

[Jody]

Good luck going forward Scotty with a support group.  This subject has come up before and I was a member of a group for 13 years until they moved and with my job it was hard to continue for now.

It is difficult to go to one for the first time but after folks meet it is easier.  You wonder if you will fit in, how will it go, the usual trepidation...It is actually more difficult to return a second time as you wonder during the ensuing week, did I fit in (my group of HIV+ gay men had been meeting for 2 years before I joined), did the guys want me to return, did they like me, etc.  Five years later I was the senior member and when new men joined I gave the first talk.  I said that one hour or so each week was not too much of anyone's time for talking about HIV, meds, living with the bugger and so on, and also as Granny and others have said to make new friends (sometimes for life) and go out for dinner, movies, shows and outdoor stuff.

So chances are no one will bite you, unless you're lucky , but they'll probably like you alot and everyone benefits.  Good luck.

Jody

[Granny60]

HIV-negative partners are not "forever" - it's a breach of confidentiality for them to be there, when the next month they might not be the HIV-positive person's partner.  Other members of the group don't usually wish to be exposed to that possibility later outside of the group.

As for what you do in a rural support group without a lot of membership I guess it's just a different scenario, but like I said I've been in many support group in two huge cities over a span of almost two decades and that's how it's been done in every single group setting.

You might be surprised. There is one poz/neg couple in our group that have been together 30 years; another that were married a few months ago and their engagement/ wedding announcements were the highlight of our meetings.   Not everyone that goes to group meetings are there to score their next shag. I know several gay couples that have been together 10 years or more. Maybe it is time for some of those big city groups to open their eyes a little and get off the reservation. We go to the Big city for doctors visits and I see the postings on the boards for the various groups where everyone is divided into little ethnic clicks that muse on meds and protection. What makes you think that a posi person's neg partner can't give the rest of us the same respect that we give each other?  We are not talking about inviting your hairdresser, clerk at 905, bus driver or shag of the  minute to group.

[Miss Philicia]

That was bad writing on my part -- it should have said: HIV-negative partners are not necessarily "forever" -- and in that way I'll still maintain what I wrote.  Most attendees are not comfortable with negative partners attending -- we've even discussed it and voted on it in my small current group as the subject came up last year with a newer member, and not a single member said "yes".  The group is for positive people first, so if the majority aren't comfortable with something that's the way it's going to go.

[Jody]

The guidelines are usually set so you know going in that the support group will be for HIV+ gay men or for HIV+ women, older folks, the newly diagnosed or young folks, or Spanish speaking people and so there is greater clarity as to who will be attending and those outside that community are not just invited in haphazzardly and if there is a facilitator of the group he or she decides who are members and they meet the person who actually must apply privately before that person meets the group.  Suprises are not a good idea, especially for the newly diagnosed.  If the group agrees unanimously to let a partner come for one or more sessions that is fine.

Jody

[wtfimpoz]

That was bad writing on my part -- it should have said: HIV-negative partners are not necessarily "forever" -- and in that way I'll still maintain what I wrote.  Most attendees are not comfortable with negative partners attending -- we've even discussed it and voted on it in my small current group as the subject came up last year with a newer member, and not a single member said "yes".  The group is for positive people first, so if the majority aren't comfortable with something that's the way it's going to go.

Interesting that you two are having this discussion.  I've lived in rural MO and a big east-ish city.  There are underlying social differences at play here, more than just a general need for attendance.  Its hard to put into words.  If you tell anyone in the former you're made uncomfortable by a neg partner, you'll look hostile to the poz partner and you'll look whiney.

[jkinatl2]

What makes you think that a posi person's neg partner can't give the rest of us the same respect that we give each other?  We are not talking about inviting your hairdresser, clerk at 905, bus driver or shag of the  minute to group.

well, I imagine it is for the same reason that we are divided here. Negative partners are free to post in "Someone I Care about has HIV" but not in "Living With." Same reason male partners of females are not allowed in the "Positive Women" forum.

It is pretty difficult to create and maintain a "safe space." We have restructured this forum several times since I joined. Used to be only one forum. Then it split into two. Then three. Now look at it, and I wonder if we are done yet. I am sure there are many groups that function perfectly well with serodiscordant couples both attending. Looks like yours is one.

I get frustrated, and I am sure that I frustrate my negative boyfriend when I talk about pill fatigue, and not really wanting to rake them anymore. He doesn't understand because, no matter how hard he tries to crawl inside my head, he can't. and I imagine that if I brought up that subject in any forum besides "Long Term Survivors" I would get a lot of the same responses.

I know I for one would not want to go to an HIV positive support group to help end the stigma. I would go because I needed support, information, and the intimate understanding not only of my situation, but my feelings. I imagine it's tough to start up and run a group, and I admire the hell out of Scotty for trying. It can, I imagine, be a real "herding cats" situation. I think that getting a consensus, and branching off if necessary is almost inevitable, especially if the group gets large.

The last physical group I went to was about eight years ago. We would meet for an hour or so, then some of us would go out for dinner or drinks after. The "after-group" was more relaxed and included partners, many of whom were negative. We just didn't talk about group stuff there. Which is cool, because sometimes the positive partner really needed to vent about the negative one.

I think these forums here, and many HIV organizations are prime places to try and end the stigma surrounding HIV. But we have to keep in mind that there is often at least as much in ourselves that needs addressing as there is in those around us.

[Granny60]

  Suprises are not a good idea, especially for the newly diagnosed.  If the group agrees unanimously to let a partner come for one or more sessions that is fine.

Jody

Agreed. I do find that often the neg partner needs the support/info more than the pos partner. They are living with them 24/7, keep track of their meds and doctors for them and often need someone to share with or answer questions. Surprising enough, it seems the neg partner usually comes and asks questions quietly on the side as they seem to be very aware of the stigma and make an extra effort to protect the partner they care about.  Everyone has to find their comfort zone. There are some members who's partners do not come. we see them out elsewhere, but not at meet. Likewise, if you are not comfortable with another posi or neg person  knowing your status, you need to stay at home.  Trust and confidentiality go a long way. When someone is invited to meet, they need to agree to abide by  confidentiality before hand,  or they are not allowed to come. Most the meets I have been to,  nobody knows anyones last name , email address, or address for months, until  they are comfortable or friends enough to give it out.  Nobody is handed a sign in sheet or directory of members.  There are still three people that I do not know their address or last name.  Phone number and email, yes,  the rest no. That gives them a degree of anninimity like here on these forums where they can still share about their lives, but nobody is going to be knocking on their doors. When they are comfortable enough to share, they will. No decent well intentioned person wants to parade a newly diagnosed person around on stage like a circus freak. It is nice when someone in the group is willing to reach out to them, try to be friendly and ask if there is anything they need or want to talk about. Those little gestures are how friendships start. The annonimity part makes it tough when someone comes only one time and you can see they are ill, and hurting , scared, new to the area and they don't come to next meet. You have to have the case manager contact them  to see if they would like to talk to you and find out what you can do to help.  Sometimes that is what it takes. Making that extra effort has given me two sweet friends who never miss a meet now.  No matter how you make it work... we need companionship, understanding, an ear, advice and love and it appears that those of us that find that do better and we are able to help each other keep things more stabil.

[Granny60]

well, I imagine it is for the same reason that we are divided here. Negative partners are free to post in "Someone I Care about has HIV" but not in "Living With." Same reason male partners of females are not allowed in the "Positive Women" forum.

It is pretty difficult to create and maintain a "safe space." We have restructured this forum several times since I joined. Used to be only one forum. Then it split into two. Then three. Now look at it, and I wonder if we are done yet. I am sure there are many groups that function perfectly well with serodiscordant couples both attending. Looks like yours is one.

I get frustrated, and I am sure that I frustrate my negative boyfriend when I talk about pill fatigue, and not really wanting to rake them anymore. He doesn't understand because, no matter how hard he tries to crawl inside my head, he can't. and I imagine that if I brought up that subject in any forum besides "Long Term Survivors" I would get a lot of the same responses.

I know I for one would not want to go to an HIV positive support group to help end the stigma. I would go because I needed support, information, and the intimate understanding not only of my situation, but my feelings. I imagine it's tough to start up and run a group, and I admire the hell out of Scotty for trying. It can, I imagine, be a real "herding cats" situation. I think that getting a consensus, and branching off if necessary is almost inevitable, especially if the group gets large.

The last physical group I went to was about eight years ago. We would meet for an hour or so, then some of us would go out for dinner or drinks after. The "after-group" was more relaxed and included partners, many of whom were negative. We just didn't talk about group stuff there. Which is cool, because sometimes the positive partner really needed to vent about the negative one.

I think these forums here, and many HIV organizations are prime places to try and end the stigma surrounding HIV. But we have to keep in mind that there is often at least as much in ourselves that needs addressing as there is in those around us.

When you go to group  that is establlished, you have broken down a barriar of stigma, ///////////////////////////////////when you allow neg partners to join  you have broken another barrier,  ////////////the next question is how many  barriers do you breakdown and still be comfortable when you are letting the church communuty  and the local news page read it. Do you build a comfort zone and stick, or do you go viral with your virus>?

[Hellraiser]

I get frustrated, and I am sure that I frustrate my negative boyfriend when I talk about pill fatigue, and not really wanting to rake them anymore. He doesn't understand because, no matter how hard he tries to crawl inside my head, he can't. and I imagine that if I brought up that subject in any forum besides "Long Term Survivors" I would get a lot of the same responses.

One year later and I'm already over it.  Prior to this I was not someone who ever went to the doctor.  I didn't take medicine for anything.  Coincidentally enough I had an extremely strong immune system and never really worried about or got sick.  Nowadays I deal with infections on a regular basis as my immune system is still piecing together some form of defense.  I'm excited every time someone posts about a cure or an advance, but it's always just one more brick in the Great Wall of China.

It feels a little bit like claustrophobia.  You want to escape from it desperately, but there's nowhere to go.

[weasel]

HIV-negative partners are not "forever" - it's a breach of confidentiality for them to be there, when the next month they might not be the HIV-positive person's partner.  Other members of the group don't usually wish to be exposed to that possibility later outside of the group.

As for what you do in a rural support group without a lot of membership I guess it's just a different scenario, but like I said I've been in many support group in two huge cities over a span of almost two decades and that's how it's been done in every single group setting.

   Yes How Nize 

   I Lived in Las Vegas for 30 years ! Their support groups  are DOG & PONY SHOWS !

  Saint Louis is a HUGE  City ...............

  The support groups there are PITIFUL !

  Yes Maybe we live in Rural MO. BUT our support pot luck group is a place of comfort to all that

 attend .

  I have NEVER been to a group that did NOT allow NEG partners ! EVER !

 What on Earth would  be going on that  your partner  could not learn something   

 I am not into segregation of any sorts 

 I have been with my NEG Husband for over 30 years 

There have been times I have asked Bob to stay home 

And you know what ? , It just causes me to miss him , so I don't do that too often 

 Small rural towns  are more  nosey body than cities tent to be , but they  also have the

same HIV issues as Big city's .

As for the comment of " What we do in small rural comunities " , Our support group has MORE attendees

 than what I have seen in Las Vegas OR Saint Louis , I know about New York City groups 


                                                                              Weasel

[jkinatl2]

What on Earth would  be going on that  your partner  could not learn something   Huh] What on Earth would  be going on that  your partner  could not learn something   Huh

Well, if I felt that my partner was isolating me sexually, or that he was thinking of leaving me because I was sick or broke, or felt that awful stigma of being on diisability was making it impossible for us to further our relationship to another level, I might share that in a confidential group before I talked to my partner about it.

If my partner was pressuring me to do things I wasn't comfortable doing because I am UD, I would talk about that in a support forum.  If I sometimes got frustrated and even resentful  that my partner enjoyed health and I did not, I might talk about that in a support forum. If I had concerns that I was staying in a relationship simply because I felt like a leper who no one else would want, I might mention that in a confidential support group. If I needed tips to overcome the diarrhea and the anal fissures that often accompany it, because it was destroying my sex life, I would want to feel comfortable talking about that in a support forum before talking to my partner.

That is just off the top of my head. I can think of more, most likely, but it is way too early in the morning and I have had no coffee,

It was actually in a support group (the one I mentioned in an earlier post) that I discovered the then-unreported CNS impact of Sustiva - after my doctors and other people had dismissed them as depression. Were it not for other people in that group coming forward with being suddenly batshit insane, I do not know what might have happened. I can certainly imagine someone not wanting their partner to know that sort of stuff, at least not until it was understood.

*edited to fix quote

[Miss Philicia]

  Yes How Nize  

   I Lived in Las Vegas for 30 years ! Their support groups  are DOG & PONY SHOWS !

  Saint Louis is a HUGE  City ...............

  The support groups there are PITIFUL !

  Yes Maybe we live in Rural MO. BUT our support pot luck group is a place of comfort to all that

 attend .

  I have NEVER been to a group that did NOT allow NEG partners ! EVER !

 What on Earth would  be going on that  your partner  could not learn something  

 I am not into segregation of any sorts  

 I have been with my NEG Husband for over 30 years  

There have been times I have asked Bob to stay home  

And you know what ? , It just causes me to miss him , so I don't do that too often  

 Small rural towns  are more  nosey body than cities tent to be , but they  also have the

same HIV issues as Big city's .

As for the comment of " What we do in small rural comunities " , Our support group has MORE attendees

 than what I have seen in Las Vegas OR Saint Louis , I know about New York City groups  


                                                                              Weasel

I said NOTHING that demeans rural communities so stop being so defensive.  In fact Granny brought up that angle first, stating clearly that if negative partners didn't attend that would wipe out 25% of their members.

Get a grip (and learn to format your text while you're at it)

[Granny60]

jkinatl2, If you want to have any type of long term relationship with your partner, he/she is going to have to learn to deal with your issues. Every person has issues of some sort, Straight /Gay, infected/not,  some like to watch movies , some  jog...... diversity keeps us from dying of boredom;  but partners do not hide what makes us the individual we are.  Your partner is with your 7 days a week.  Partners support each other. When you don't take out a few minutes to share with each other you are just building barriers between you.  Group is a good place to get answers that your partner may not know the answer to, but keeping your issues hidden in a bottle at home is not good. 

[jkinatl2]

jkinatl2, If you want to have any type of long term relationship with your partner, he/she is going to have to learn to deal with your issues. Every person has issues of some sort, Straight /Gay, infected/not,  some like to watch movies , some  jog...... diversity keeps us from dying of boredom;  but partners do not hide what makes us the individual we are.  Your partner is with your 7 days a week.  Partners support each other. When you don't take out a few minutes to share with each other you are just building barriers between you.  Group is a good place to get answers that your partner may not know the answer to, but keeping your issues hidden in a bottle at home is not good. 

There are things about my mom that Dad never knkew in fifty one years of marriage, and vice versa. And I could never imagine being with a partner 24/7.

Would I, personally, bring up serious issues? Of course. But I would likely talk about them to a therapist as well, especially if the issues were mine. Same with groups, in my opinion. Perhaps I am alone in that opinion. I would also not be comfortable with my mom in an HIV positive support group, and I tell her almost everything.

I fear I did not make my point very well, and instead of risking further miscommunication, I shall respectfully withdraw.

I do wish Scotty the very best in this endeavor!

[weasel]

    Sorry Philicia ,
                       I was raised in Fairfield Connecticut  and was taught  manners .


               I write  as I do !

                I do believe you plagiarized Ann's   comment to someone else    LOL

                                                     LOVE you 

                                                                      Weasel


                         P.s.  I'm done with this topic , I said " I DO " THAT MEANS FOREVER                    
                   

[Miss Philicia]

                I do believe you plagiarized Ann's   comment to someone else    

Excuse me -- how did I swipe something Ann wrote in the manner you accuse me of?  She's not even participated in this thread.

This makes the second instance that you've accused me of saying and/or doing something that's not actually happened. That is flame baiting and I'd kindly request that you cease doing this.

[Granny60]

Give starting a group a try. time will tell what suits everyone's/your taste or not. Who knows, maybe you will end up with six groups like a bunch warring gangs like we see in a lot of other places where people are to damn good/intolerant to get along with others , but at least you gave it a shot and will gain experiences that nobody can take away from you. Best of luck to you!

[wtfimpoz]

One year later and I'm already over it.  Prior to this I was not someone who ever went to the doctor.  I didn't take medicine for anything.  Coincidentally enough I had an extremely strong immune system and never really worried about or got sick.  Nowadays I deal with infections on a regular basis as my immune system is still piecing together some form of defense.  I'm excited every time someone posts about a cure or an advance, but it's always just one more brick in the Great Wall of China.

It feels a little bit like claustrophobia.  You want to escape from it desperately, but there's nowhere to go.

I second that.  I'm so sick of going to the doctors office.  And waiting.  And wondering.  And worrying.  I'm sick of following up with stupid concerns *just in case* they turn out to be something after all.  And I hate that I now have this conjoined fetal twin, from whom I'll probably never escape. 

[HowYouDoin]

poz.com is the best support group out there my friend. I went to the Gay Men's Health Crisis center support groups and the Gay and Lesbian Center and they depressed me even more. This is my honest experience. I went to the newly infected/diagnosed meeting and I heard people who wanted to commit suicide by standing in the front of the bus, people talking primarily about how they limited their options on getting a boyfriend and how medication is so toxic and as a newly diagnosed that was not the feedback I needed.

I suggest you give it try and if it makes you feel worse than you already feel, stop going. I talked and met with some awesome people from other places including the clinic i go to and people I chatted with online who were also HIv poz and they encouraged me lil more.

al

[Miss Philicia]

poz.com is the best support group out there my friend. I went to the Gay Men's Health Crisis center support groups and the Gay and Lesbian Center and they depressed me even more. This is my honest experience. I went to the newly infected/diagnosed meeting and I heard people who wanted to commit suicide by standing in the front of the bus, people talking primarily about how they limited their options on getting a boyfriend and how medication is so toxic and as a newly diagnosed that was not the feedback I needed.

I suggest you give it try and if it makes you feel worse than you already feel, stop going. I talked and met with some awesome people from other places including the clinic i go to and people I chatted with online who were also HIv poz and they encouraged me lil more.

al

If you're in NYC try going here and I think you'll have a much better experience:

http://friendsindeed.org/

ps: all of those three things you just brought up as happening at the real life support group come in spades on this forum as well from the newly diagnosed.  Stick around for a while

[Granny60]

poz.com is the best support group out there my friend.
al

POZ/AIDSMEDS are good places to rant, share information,  and ask for information, but I do do not find POZ to be FUN. A good support group is like a girls night out.Unfortunately a lot of casemanagers are told to have support groups as a way of preaching to the choir in an effort to try to keep the number of infected people in check.  Unless you think HIV is your new saving deity, nobody is going to travel to hear the same old crap 52 times a year.  You can still chat and share info like here on POZ, but have a blast too. I just told someone tonight that they need to throw the lectern on the burn pile and let group be a group. We have already been stabbed in the neck with  take your meds,  abstinence, use rubbers, by the social workers and doctors. No more guest lecturers needed.  Enough already. What we need in group meets is to have some enjoyable time that makes us feel like normal people again. If you have a guest lecturer, keep it short and simple so we can visit, socialize, laugh a little and have a want to come back again. That is probably the only reason why Matty, and Phillicia  are allowed to get away with what they say and the pictures they post...... Helps keep us from getting site burnout.

[Miss Philicia]

That is probably the only reason why Matty, and Phillicia  are allowed to get away with what they say and the pictures they post....

Conspiracy of sorts, rest assured.

[bocker3]

There are things about my mom that Dad never knkew in fifty one years of marriage, and vice versa. And I could never imagine being with a partner 24/7.

Would I, personally, bring up serious issues? Of course. But I would likely talk about them to a therapist as well, especially if the issues were mine. Same with groups, in my opinion. Perhaps I am alone in that opinion. I would also not be comfortable with my mom in an HIV positive support group, and I tell her almost everything.

I fear I did not make my point very well, and instead of risking further miscommunication, I shall respectfully withdraw.

I do wish Scotty the very best in this endeavor!

I think you made your point very well.  I couldn't agree more with what you said.  I've been with my negative partner for over 20 yrs.  There is little that we don't know about each other, but we still need outlets apart.  We met in AA, but maintained some separate AA meetings.  Why?-- because sometimes you need to talk about things that you'd rather not start with your partner.  It might be frustration that you are feeling about the relationship that you simply need to "release" in order to move on.  I do not subscribe to the idea that you must talk out everything.  Even to this day, I get frustrated over somethings that he does "differently" than I -- I have realized that I have to accept those things -- so I always do the laundry and the dishes -- but I get so frustrated sometimes that I have to vent to someone about it so that it doesn't fester.  This is also why partners often have separate friends -- you simply can't spend 24/7 with any one person and not need some time apart.  I love my partner more than ever, but we would have to split up if I couldn't have my individuality and my own friends.  Secrets?  not so much, but talking about fears and frustrations with others is not really a "secret" in my mind.

As for partners counting pills and minding medical appts -- I can assure you that if I relied on him to do that for me I would be in a world of hurt.  Just like people are diverse, so too are relationships.  Just because I am the positive one, doesn't mean I need him to help me do what I must.  In fact, I'm the one to remind him to take his one pill each day -- Zocor.  It's dangerous to paint all in one brush --- what works for one couple may, in fact, not work and possible destroy another.

Mike

[Granny60]

Conspiracy of sorts, rest assured.

  Along with Aliens, UFO's, and who shot Kennedy

[red_Dragon888]

Thank you guys so much for your time and feedback!  This helps me a lot and has helped me to know which direction I would like this support group to go.   

I haven't told my partner about this idea of wanting to start a support group, but I hope that he is okay with it.  I know the idea of him not always being able to be there when I am around a bunch of other people may not settle well with him.  I'm just nervous to talk to him about it for some reason.

I'll try to remember to let you all know how it goes.  Thanks again -

Scott

Good Luck.

[carousel]

Hi Scott

I was wondering about the funding for the group.  As Joe mentions, it's important that if you are to create a group, that you have somebody professional to facilitate the group.  Without that, you could find yourself in great difficulty.  Members not getting on, people taking over meetings and what would happen if somebody is at risk of harm.

Also, I was thinking about who should be included in the group.  It is one thing to think about being inclusive, even including partners.  I wasn't thinking about confidentiality, but more that there could be concern that they knew each other and that could cause problems for others in the group, making it unbalanced.  Also, we may think that HIV links us all, but in reality, there are differences in experiences.  I think that I have tended to prefer groups of gay men.

One way around this. might be to create a social group for HIVers that is based more around socialising.  Cinema, going out for food, walks etc.  It would be less formal and might negate a lot of the issues around setting up a support group.  There are such groups, using for instance the website Meetup.

[HARLEY_B]

 Apologies, Granny did not notice you had responded to my earlier post. I have sought out support groups in this area but there aren't any to speak of. I don't have a case manager right now. I just go to my doctor when it's time for the semi-annuals. Also, have to agree with Mike's post above. It is very difficult being with someone 24/7 and not feeling like an individual. I have a negative partner and he attempts to take over everything and make everything alright...well he just succeeds in driving me nuts no matter how good his intentions are and I find it hard to talk to him about most things regarding my illness because he truly does not understand everything connected to it from the medications to the feeling of being out of control and the he comes along and attempts to control things further...Sorry...ranting...
 Thank you again for responding to me. I did not mean to ignore your answer.
                                                                                                Tim

[Granny60]

Apologies, Granny did not notice you had responded to my earlier post. I have sought out support groups in this area but there aren't any to speak of. I don't have a case manager right now. I just go to my doctor when it's time for the semi-annuals. Also, have to agree with Mike's post above. It is very difficult being with someone 24/7 and not feeling like an individual. I have a negative partner and he attempts to take over everything and make everything alright...well he just succeeds in driving me nuts no matter how good his intentions are and I find it hard to talk to him about most things regarding my illness because he truly does not understand everything connected to it from the medications to the feeling of being out of control and the he comes along and attempts to control things further...Sorry...ranting...
 Thank you again for responding to me. I did not mean to ignore your answer.
                                                                                                Tim

No need for any apologies. Yes when someone wants to control everything it can be tough. Most of us just say , Yes dear,  nod our head and go on about our business .  I have seen that sometimes it helps  for partners to hear  issues  we deal with from other people that have to deal with the same issues.  Makes us come across as less as hypocondriatic and makes  them a little more understanding..... but if that makes them want to control you life more ....   It could well be that the attempt to control things in your life is just their way of trying to watch out for you because they care and love you.  Maybe meeting people that are managing well after a long time would ease his fears that he might lose you and he'd give you some slack? With or without your partner,  groups are great.  Our meet last night went on for hours.   . We have had a graduation of sort...... not only are we meeting twice as often now, we're no-longer going to have any case manager at group.    

[HARLEY_B]

 Sounds like your group is a very good thing. Glad that you have it. I'm sure there must be small band in my area and I've asked the Ryan White coordinator about them thinking she might know but she said there were not any around here..It's alright though. I do post here from time to time and it helps just to get things out there and get other people's opinions and thank you for yours!


                                                                                                 Tim

[Granny60]

Sounds like your group is a very good thing. Glad that you have it. I'm sure there must be small band in my area and I've asked the Ryan White coordinator about them thinking she might know but she said there were not any around here..It's alright though. I do post here from time to time and it helps just to get things out there and get other people's opinions and thank you for yours!


                                                                                                 Tim

You might ask your coordinator to ask people if they would like to start a local group as he/she see people.  Every group has to start somewhere.  People here (forums)  are great, but nothing beats a nice hug, a pat on the back, a handshake and a smile.  Had a lady last night needed a hug. her husband (not pos) is in a very bad way health wise;   a couple of guys make my day every time I see them. They have a smile that outshines the sun.

[Snowangel]

Do you know how your group got started, Granny?
I asked the nurse that takes my blood to ask around but I haven't heard anything from anybody.
Where do you meet?
Maybe I should try starting my own, I posted something on craigslist but never heard any back except there is a gay mens group a couple of towns over.
Thanks,
Snow

[Granny60]

Do you know how your group got started, Granny?
I asked the nurse that takes my blood to ask around but I haven't heard anything from anybody.
Where do you meet?
Maybe I should try starting my own, I posted something on craigslist but never heard any back except there is a gay mens group a couple of towns over.
Thanks,
Snow

I think the Ryan White program encourages support groups here in Missouri. I know of several groups and there is funding to help with transportation to the meets. (few cents per mile for gas). We didn't know about these meets locally for a couple of years, but my understanding is the case managers from the county health departments who have a list of all "we peoples" and our contact information. A meeting place was found, and a letter sent to everyone on the list ( I hope)  letting us know about it with the warning that everyone is expected to respect each others confidentiality and if you had concerns about others knowing your status, to give careful consideration about coming. We never heard about the local group initially,  just one 90 miles away, but a friend here on POZ and I were visiting and I found out about the local group. They actually travel 75 miles our way  to our group.  There have been pharmacists and drug reps that have had meals catered, HSI I think has  paid for pizza parties,  but as we "cool" people started coming bringing desserts and such, it has turned into a potluck affair. ( Pies, cakes and some WONDERFUL corn chowders last night).  A pharmacist was here last night with a drawing ( they catered supper a couple meets back) . We have cake for birthdays (3 next month).  Because of Hippa  rules, you will have to get a casemanager or county health person  to make the initial contact with people unless you can get your clinic to post notices. In St.  Louis, I have seen notices in all the examining rooms advertising  the different groups. Gay, Straight,  Married, whatever with the little tear off strips with phone numbers on the bottom. Although I haven't seen anyone locally  from here,  most colleges have LGBT clubs.  You might check with them if you have a university to see if they have any people that would like to start a support group. Another suggestion might be to talk to the pharmasict where you get your meds and see if they would be interested in sponsoring a support group and offer their HIV med clients  the opportunity to come.  Even a little brunch or coffee could be a start. Everyone will be nervous at first. this is normal.  nobody know  anyone or anything about them except why you are there. It will take a few meets of people  introducing themselves and visiting till you find out who you ar comfortable with/trust.  I understand that the pharmacist that comes once in a while to our group ( travels 120 miles by the way), brings games to some groups in other cities.  I have thrown games in the car before, but we spend so much time eating and visiting, we have never gotten to a game yet.  We have supper time meets so people can come after work and usually don't stay too late because some people have 1 1/2 hour drive home and work in the morning. ONCE in a WHILE it is good to have someone with medical or program knowledge to answer questions,  but nobody is going to come very long if it turns into lecture 101.  Good luck! Personally, I think we are cheating a lot of shrinks out of  client time,  but we are having fun!  edit:  We are using a meeting room in a community building.  No charge.  Just have to clean up  and lock up when we are done. When we reserve a meeting room we just put support group on the calendar. Nobody has to know what kind of support group.

[Snowangel]

Cool, Thanks!
What I can't understand is why the ASO's don't do these from the get go?  Yours sound a lot more normal, the ones around here are usually at 10 or 11 in the morning, who can go to that?
I don't know if I have the balls yet to try to get one going myself but I am thinking about it.

The first support group I ever went to was run by a beautiful blind women that used to amaze me with her memory and how each week she would come up with something deep for us to relate too, she gave really good hugs too
Thanks again,
Granny

[Snowangel]

OOps, you're Granny, I'm Snow 

[Granny60]

Cool, Thanks!
What I can't understand is why the ASO's don't do these from the get go?  Yours sound a lot more normal, the ones around here are usually at 10 or 11 in the morning, who can go to that?
I don't know if I have the balls yet to try to get one going myself but I am thinking about it.

The first support group I ever went to was run by a beautiful blind women that used to amaze me with her memory and how each week she would come up with something deep for us to relate too, she gave really good hugs too
Thanks again,
Granny

Yeah,  it takes balls,  and it  can take time at first. I find we really do  help each other a lot.  when people need help, someone volunteers. We have swapped/ sold furniture, given away bicycles, dishes, furniture, worked on each others vehicles, share recipes, trade flowers and garden produce,  help each other find doctors, pharmacists, help the sick ones fill out paperwork,  visit and  go out together... in otherwords help each other put our lives back together again.  I knew a blind lady once who could remember EVERYTHING about EVERYONE.  Who their last boyfriend was......   sharp as a tack!

[Miss Philicia]

Gilead Pharmaceuticals sponsored a two hour, fully catered four course meal and presentation at Maggiano's Little Italy in downtown Philadelphia this evening -- there was a powerpoint presentation, and then a talk by Dr. Joseph Ondercin of The Jonathan Lax Treatment Center -- about 50 people attended.  Evidently they are doing this every six months or so now, but I only heard of it from a friend who had been to a previous one.  Oddly it was only for gay men.  Perhaps they have other ones for women.

[phildinftlaudy]

Gilead Pharmaceuticals sponsored a two hour, fully catered four course meal and presentation at Maggiano's Little Italy in downtown Philadelphia this evening -- there was a powerpoint presentation, and then a talk by Dr. Joseph Ondercin of The Jonathan Lax Treatment Center -- about 50 people attended.  Evidently they are doing this every six months or so now, but I only heard of it from a friend who had been to a previous one.  Oddly it was only for gay men.  Perhaps they have other ones for women.

I love Maggianos - they have one about 50 miles from me in Boca Raton.  There is an organization down here (The Center for Positive Connections) that has monthly lectures about HIV/AIDS topics usually at a local restaurant right down the road from me - it is open to gay, bi, and straight.  Usually limited to 50 people - also paid for by a pharmaceutical company.

[Granny60]

Abbot Laboratories ( Kaletra) is one who has provided dinner before as well as Beverly Hills Pharmacy  Here in Missouri.  ( Hope I am getting this right because these people deserve credit for a super catered meal and contribute a lot to our well being.).  Think about how much we spend on meds with  drug companies.  A $300.00 dinner buys a lot of support. It doesn't hurt to ask if a rep can come and a lot of times they will offer the meal.  Just this week when I picked up our prescriptions I noticed that Atripla has gone up from  $1844.00 per month to  $1965.99.

[Miss Philicia]

As I've mentioned, I attend a monthly support group that is restricted to Long Term Survivors (though it's kind of loose in that definition).  We meet in a conference room of our HIV clinic at 6 PM - 8 PM, and light food/sandwiches and drinks are served, the cost of which is reimbursed by Roche though the ASO, as this was originally a group for users of Fuzeon.  Nobody is on Fuzeon currently but they keep paying for the food, as it's low cost I assume for them.