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Author Topic: Support groups?  (Read 352 times)

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Offline randym431

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Support groups?
« on: December 13, 2018, 05:30:04 am »
I haven't been around here for some time. Lost my life partner of 36 years Jan 2017 from a sudden heart attack. HIV wasn't his problem, he was negative. But he was a long term smoker and that caught up with him. We married in 2009 when it became legal here in the state.
Still in a lot of grief. Everyone says it gets better over time, my opinion and experience, it doesn't. Holidays are very hard.
But thats not why I stopped in after so long.
I stopped in to see what people were saying about Biktarvy, which I just switched to this week from Atripla. Atripla was great, but the old doc suggested Biktarvy a better long term option.
Also.... I joined a local HIV support group a few months ago. Interesting group.
Came across the group when researching medicare options. Long story....
I enjoy the small group of about 8 to 12 depending on the attendance.
However, the group moderator, a professional, tends to assume people living with HIV have this huge HIV stigma hanging over them.
The moderator kinda dwells on the subject, week after week, and I don't really get it.
I mean, if this were the 80's or 90's, then maybe. But in todays world, I think people are pretty much use to knowing people with HIV. And I really don't see or feel the stigma.
Apparently, the same goes for the other members. When asked about living and dealing with the stigma of HIV, members look surprised and a bit bewildered.
Makes me wonder how professionals perceive people that are HIV pos? If maybe they are professionally stuck in an era when stigma was a problem. But today, not so much.
Still, its an interesting group with interesting selection of members.
Two are women. One a dental hygienist that went thru hell getting diagnosed. They thought it was cancer. Then this or that. HIV never occurred to her doctors. She was hit hard with the HIV virus before finally diagnosed. And asked some embarrassing questioned that she still jokes about i.e. was she ever in the sex trade? Ever an IV drug user? This lady is as close to a nun as one can get. Witty and fun to be around but very very religious. She figured her infection had to come from needle pricks in her job as a dental hygienist. Thats all she could figure.
But anyway, an interesting diverse group. And I'd say with stigma free members.
So, should people with HIV feel a stigma in todays world? And if not, is that a problem in itself? A lot of professionals seem to think so.
« Last Edit: December 13, 2018, 05:36:28 am by randym431 »
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Offline JimDublin

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Re: Support groups?
« Reply #1 on: December 13, 2018, 06:01:33 am »
Hiya

Firstly really sorry to hear about your loss.

Hugs and wishing you contuined strength.

Quote
However, the group moderator, a professional, tends to assume people living with HIV have this huge HIV stigma hanging over them.
The moderator kinda dwells on the subject, week after week, and I don't really get it.

I tend to avoid HIV Negative led groups and stick with peer support, some therapists or counsellors are really good in all fairness but most are frankly clueless.  Tend to find them stuck in the past or unable to cope that people from different times, backgrounds and history will have vastly different experiences.

Quote
Makes me wonder how professionals perceive people that are HIV pos?

I think most in a good way and despite thinking that many are clueless I don't think the professionals precive us negativity generally speaking

Quote
So, should people with HIV feel a stigma in todays world? And if not, is that a problem in itself? A lot of professionals seem to think so.

Quote
If maybe they are professionally stuck in an era when stigma was a problem. But today, not so much.

Question. Do you think stigma & discrimination on the basis of HIV status is still an issue / experience today for some people ?

Jim
« Last Edit: December 13, 2018, 06:06:57 am by JimDublin »
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Offline bocker3

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Re: Support groups?
« Reply #2 on: December 13, 2018, 06:43:48 am »
First - So sorry about your loss.  I can only imagine how difficult it must be to lose someone after all those years.  Hugs!!


I agree with Jim - would far prefer a support group led by someone living with this virus -- of course, we aren't always "lucky" enough to encounter one of those.

As for HIV stigma - it is funny how we can be so used to it that it doesn't always seem obvious, but this quote (below) is really stigma in action.

Two are women. One a dental hygienist that went thru hell getting diagnosed. They thought it was cancer. Then this or that. HIV never occurred to her doctors. She was hit hard with the HIV virus before finally diagnosed. And asked some embarrassing questioned that she still jokes about i.e. was she ever in the sex trade? Ever an IV drug user? This lady is as close to a nun as one can get. Witty and fun to be around but very very religious. She figured her infection had to come from needle pricks in her job as a dental hygienist. Thats all she could figure.

Basically - is shows how people see HIV as only a disease of "those people" -- you know, gays and addicts.
It isn't necessarily the shunning and fear of the 80's and 90's.  I agree that more people know someone with HIV and that can help, but I do think stigma is alive today.  Just often subtler.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
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Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
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May2015 969/28% <20

Offline weasel

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Re: Support groups?
« Reply #3 on: December 21, 2018, 06:04:10 pm »


 Hi Randym431 ,

                              I'm very sorry for your loss , as unfortunate as it is I will soon
 be in your shoes after 38 years   :'(

    Not sure how I will handle the loneliness , already many old friends have dumped me  for unsaid reasons .....

   I go to a support group lead by a Pharmacist , he is 35ish , one of the best looking and acting Mammals I have ever encountered. He lets the group discuss at will what we want to talk about.   It is the joy of the month for me .

 I came out to the community several months ago , I was at the point of not caring if people were bothered , what they going to do kill me ? don't care .....

 As far a stigma , it's their problem not mine !    I am fortunate to have a small group of people that care for me and don't mind my company .

   I do know some people around here , S.E. Missouri still are more offended by the fact I have been with a man since 1980     than they are about me having HIV .

   I hope it gets better for you .   I'm sure it's a very sad time of the year .


                                  Nice to meet you , be well ,
                                                                           Carl
" Live and let Live "

 


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