BubbaPat:
Just something I was wondering. I looked around DFW some time back and couldn't find any. I know there is a Resource Center but I didn't find anything of that nature. Does anyone feel the need for it anymore?
Patrick
numbersguy82:
Interestingly enough BubbaPat, we are about to have regular support group meetings here. I am not a moderator but we are def in the final stages of putting together the logistics and structure for them.
I agree with you, in person or even virtual support groups are hard to find. Also they are poorly attended and tend to not be regularly scheduled. I believe that is a huge focus as the team here hopes to fill that much needed gap.
Would you attend if this forum offers a regular virtual support focused group??? In addition, we meet for a less formal virtual gathering regularly which tends to lean more towards socializing and fellowship, but still discusses medical and health topics.
Tonny2:
ojo. Hi dear bubbapat…bear hug to you from your sunshine buddy…hang on n there that life is still beautiful, take it from someone who lives with pain 24/7 and losing his eyesight but still fighting…I do have my bad moments but my mantra is “ there’s someone else who has it worse than me”…love
leatherman:
HIV support groups have always been a problem. First, you had to be in an area with enough population to have enough PLWH to even begin to think about having support much less in groups. Then as time went by and transmissions were reduced, the amount of PLWH, even in urban areas, began to stabilize and decrease. Not to mention funding for support services. Treatment funding is always chosen over mental health services. How about HIPAA rules for privacy preventing patients from knowing and talking to other patients. Doctors, even general practitioners, tend to farm out many issues; so your HIV doctor is never going to consider you mental health too much but would expect you to see a counselor, therapist, etc for that kind of health issue.
Every year I've volunteered with Ryan White, and at budgeting time I've voted to distribute more funds to mental health and peer support services. Every year I'm outvoted to fund treatment and meds. Heck! Everybody else tries to vote more funds to dental but that always falls pretty flat too.
Of course, I should point out that these very forums were formed in part because of a need of peer support. Way back in 1995, the internet was just starting to get some users. In 1996, ARVs were finally started to hit and PLWA/H quit dying. In 1999, aidsmeds.com started. PLWH started coming to this site to find out how to keep living, how to live with side effects, when the next meds were going to come to market, techniques or temporary solutions to not dying before better meds came along, and quite frankly how to deal with the deaths of our loved ones. PLWH scattered around the world needed some peer support but, like most of us, lived in areas where peer support was nothing more than a dream. Needless to say in those days of evolving meds and dealing with side effects, there were a lot more people here and a lot more posting.
Here we are nearly a quarter of a century later and even though most of the original gang have moved along (through death, or simply living past an AIDS diagnosis and going back to having a life), the forums are still going on.
--- Quote from: BubbaPat on August 23, 2023, 08:51:57 pm ---Does anyone feel the need for it anymore?
--- End quote --- the easy answer? yes
Newbies always need support to realize that it's 2023 HIV not 1994 HIV, and that they're not going to die. After that, they need to be pushed to realize that 2023 HIV is just a chronic manageable issue, not even a problem, for most. Then there are the people needing advice about dating, meds, adherence, insurance-y stuff, etc. Later on there's dating issues (still), trying to decide if your health issues are HIV or that you're just getting older. LOL But isn't that the whole point about taking meds? To get old enough to hurt, age, and then die in your 90s instead of dying in your 30s?
--- Quote from: numbersguy82 on August 24, 2023, 06:41:43 am ---Interestingly enough BubbaPat, we are about to have regular support group meetings here.
--- End quote --- And what do you know? This site is evolving and trying to find new ways to give the peer support people need. :D
Jim Allen:
--- Quote ---Does anyone feel the need for it anymore? --- End quote ---
I wouldn't be here if there wasn't a need for it and I've needed it to still be here 😉