Group Therapy

[StevenSF]

Anyone been in or knows of group therapy for HIV+ men? Preferably in person but virtual might work. Organizations tend to focus on helping people with finding medical and financial resources or even dating and jobs (all pivotal topics but I have those covered now lucky me I know), but what I am seeking is to talk with folks who are dealing with more mundane everyday friendship or relationship dynamics. I’ve tried social activities for HIV+ folks but not quite the right setting to explore these topics.

Just curious if such kind of a group therapy exists.

[leatherman]

Welcome.

to get some better answers, you might want to tell us a little about your situation. How long you've been living with HIV? How your numbers are? Age? Area where you live? Any of these things might help you get an answer more significant for you.

In America, it's hard to find the kind of support/counseling I think you're asking about. Health care providers are usually just focused on that - the facts of your health. Funding for support groups is rare and unique. The little bit that you'll find is usually geared towards helping those nearly diagnosed.

Seeking a group about everyday friendships or relationship dynamics sounds more like talking with others friends as support or seeking mental health counseling instead of anything specifically HIV related. .... or maybe I just don't know enough to offer you any other advice. LOL

[harleymc]

Be very cautious of this,  my own experience of peer support groups, was they last only as long as is convenient.

I had one friend from my peer group who died alone in hospital, I was the only visitor from the group.

[numbersguy82]

Welcome to these forums! You’ve actually stumbled onto my “support group”. I became active in these forums again because I was seeking fellowship and community. We have virtual gatherings once a month which have been supremely helpful for me. I’ve made friendships from across the world, and we speak to both the challenges of being hiv positive as well as laugh at our shared experiences. It’s been fantastic for me personally.

There’s a section of the forum about the virtual gatherings and how to sign up for the Google Meet link.

All the best and maybe I’ll see you there on our next session!

[Jim Allen]

We have virtual gatherings once a month which have been supremely helpful for me. I’ve made friendships from across the world, and we speak to both the challenges of being hiv positive as well as laugh at our shared experiences. It’s been fantastic for me personally.

I love our monthly virtual meetings. Although we sometimes, nearly always cover serious topics , we also joke, laugh and share each time and it's been a great laugh hosting them and something I look forward to.

[Charles.M]

Anyone been in or knows of group therapy for HIV+ men? Preferably in person but virtual might work. Organizations tend to focus on helping people with finding medical and financial resources or even dating and jobs (all pivotal topics but I have those covered now lucky me I know), but what I am seeking is to talk with folks who are dealing with more mundane everyday friendship or relationship dynamics. I’ve tried social activities for HIV+ folks but not quite the right setting to explore these topics.

Just curious if such kind of a group therapy exists.

I was diagnosed a month ago and seeking the same as you. I have looked and looked and found absolutely nothing. I am in the Northeast US and this forum is really the only thing I have been able to find. With such a iniatially emotionally devistating DX there should be something there just is not. My ID doctor suggested I see a therapist if I need too. That is not really what I am looking for, I am looking for people who share this thing to find out how they deal with day to day life issues.

Its sad but my personal belief is that with the low numbers in the US (less than 1%) we are a low priority for  social programs. Maybe I am a pesimist but I also believe the pharmasuticals companies have little interest in finding a cure. In all these years, all they have done is create new drugs to keep the money train rolling.
I understand the cost to develop these and with such a small consumer base they need to make money. I am on Bktarvy $5000 a  month, I have seen Rukobia at $10000.00 a month. With this money rolling in for the life of the patient(s) why would you even want to find a cure???

Sorry for the rant maybe venting abit and stating the obvious.

[leatherman]

With such a iniatially emotionally devistating DX there should be something there just is not. My ID doctor suggested I see a therapist if I need too. That is not really what I am looking for, I am looking for people who share this thing to find out how they deal with day to day life issues.

Oh, I totally agree! That’s why I volunteered for “peer support” (peers meaning that we are both living with HIV) for all these years. This diagnosis will definitely blow your mind. Without someone to explain the long term view that living with HIV isn’t that bad, this diagnosis just seems like THE WORST.

Personally, my second partner and I got little to no support like we’re discussing when he was diagnosed with cancer in the hospital. But maybe we just didn’t have time for the right people to talk to us before he passed away shortly thereafter. But I really imagine there’s not more peer support for any kind of disease...unless you find internet support communities. Hey! That would be US!

Unfortunately, in the big scheme of things, health care just doesn’t really include mental health care. Your doctor sees you to treat you for an issue, not really to treat how you’re feeling about the issue. It’s completely reasonable when you think your doctor probably didn’t major in mental health care, nor really do they have time in their practice of healing to try to also counsel every patient.

But money, or I should say the lack of money, means clinics/providers don’t have the funds to pass you along to mental health care. Besides, it’s not really as much the need of long term mental health care as a need for short term support to gain knowledge and understand an issue.

During my years of volunteering as a consumer (that’s us. We’re consuming/using HIV treatment resources) advocate on both the North and South Carolina Ryan White Quality Committees, I’ve always advocated for more money for peer support/counseling/mental health. Unfortunately, that and dental are always the parts of the budget less funded after treatment is funded.

Its sad but my personal belief is that with the low numbers in the US (less than 1%) we are a low priority for  social programs..

On one hand, you’re right. <1% does make a low priority for some things; however on the other hand, the Ryan White Care Act enacted in 1990 actually makes us a high priority for testing and treatment. About 60% of people living with HIV use some sort of Ryan White funding for their care. (there would be more if all states used RW funding to cover patient’s insurance premiums). We actually all benefit from the program though. Every provider treating HIV is receiving RW funds through that 60%. That means every provider needs to hold to the Ryan White Quality measurements (guidelines to ensure successful treatment), and so we all get more comprehensive care.

Maybe I am a pesimist but I also believe the pharmasuticals companies have little interest in finding a cure. In all these years, all they have done is create new drugs to keep the money train rolling.

Ok, I have an issue with pharma but finding a cure isn’t it. I don’t get all the ads! I mean we are <1% but ads for HIV meds run all the time. It just seems like a huge waste of money. Aren’t doctors already prescribing these meds to the small population that need them? I feel like some of those advertising dollars could go to simple HIV public information ads, and lowering the costs of these meds.

But as to a cure, scientists have been working on that for longer that I’ve been infected (and that’s been decades and decades). The problem is that HIV has proven to be harder to cure than cancer…. And they haven’t cured cancer yet and it’s been a problem longer. HIV is not a virus or bacteria but a retrovirus that uses our own bodies against us by using our immune response to multiply thereby destroying our immune system.

About fifty years of research has certainly improved treatment (Boo to AZT and Norvir. Ugh. Glad those are a thing of the past) and keeps getting closer to a cure through numerous novel methods. There are whole organizations studying HIV and publishing peer-reviewed data about possible cures. That’s nothing pharma can stop or block. Unfortunately the only people “cured” so far had leukemia, got radiation/chemo destroying their immune systems and then stem cell transplants to replace their immune system to have HIV eradicated (which really isn’t “cured” by the definition).

After my own 40ish years with HIV, I’ve come to tell people not to expect a cure. Oh, I see the news every so often when a supposed cure is announced (all my friends and relatives send me the news as if I’m not paying attention. LOL), but nothing has panned out ... however research has moved forward, and that's great. By living not expecting a cure, I’m comfortable just taking my meds every day. But I am a realist (not too optimistic, not too pessimistic) and I see that a cure is getting closer. Luckily, as I’m planning on living at least as long as my grandmother who passed away a few years ago at 104, I’m expecting when the cure finally comes along I’ll still be alive to take it.