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Author Topic: Support Group for people with HIV and other serious illnesses?  (Read 3440 times)

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Offline Valence

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I tested positive for HIV in the autumn of 1988.   I became positive in either 1982 or 1984.

HIV is a drag.  And it is a whole lot more of a burden when it is accompanied by another serious illness.  I have, in addition to HIV (And I had T cells down to 103 in the bad old days) muscular dystrophy.

I know so many sweet, dumb kiddies that think that HIV is as simple as Simon Says, take two pills and wash it down with vodka and party hearty.  Well we all know that taking these drugs for years can create havoc in one's body.   

I have even met people who, upon seeing my yuchy body, tell me that I just need to stop being a lazy couch potato and just go to the gym.  Apparently, these dunces have never heard of muscular dystrophy.  And man, in our culture, in which a great musculature is lionized and adored (Man, I love it too), being fat and weak feels downright grotesque. 

So I wonder:  I would love to join a support group, or perhaps assist in forming a support group, for people who Have HIV and other serious maladies, including so many of the afflictions that assail long term survivors, including anal cancers and many other malignancies. 

Any ideas, info or suggestions for such a support group
« Last Edit: July 16, 2019, 06:11:50 am by Valence »

Offline flashdance

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Re: Support Group for people with HIV and other serious illnesses?
« Reply #1 on: July 22, 2019, 12:46:18 pm »
Support groups...friends...joining an organization...

You name it...if I am included then I am all for it.

I could easily join an online protected chat room...or msg board where hopefully there would be a chance for daily interaction when the need is there. (Always).

But we still do need to protect ourselves. If I was in Chicago...I would feel extremely safe in meeting anyone anywhere.

Living outside of a gay ghetto...one of the hardest things I am dealing with now is not even being able to trust the gay poz guy standing next to me....when we may be the only two poz people standing next to each other in a hundred mile radius of where we are standing.
You are never alone...and if you start to feel lonely....search me out...or grab your cat!

Offline leatherman

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Re: Support Group for people with HIV and other serious illnesses?
« Reply #2 on: July 22, 2019, 01:49:58 pm »
Any ideas, info or suggestions for such a support group
your local Ryan White provider (an HIV health care provider receiving Ryan White funding) is required to be open to consumer input mainly through a CAB (client advisory board). While that group is not a support group (as it should mainly be looking at quality health care performance measures and taking consumer input) should know if there is a support group or would be the place you could voice a concern about the need for a support group. Ryan White providers may also employ peer support counselors who could help with directing you to a support group or help forming a support group. Sadly mental health and peer support get little funding (as funding is directed to more important and immediate ambulatory care) so support groups aren't a high priority for most provider agencies.
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"


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