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Author Topic: What do you think?  (Read 4172 times)

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Offline Stone

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What do you think?
« on: August 07, 2009, 03:40:19 AM »
I am asking this question here because it is the only area I know I am allowed to post on so here goes: Do you think the stigma of HIV and AIDS would lessen if everyone that acquired the virus just put it out there?  It just seems so crazy that in 2009 people still feel like they have to hide and keep it a secret.  It also seems like it adds so much to the stress level.  I realize that the social climate back in the 80's dictated that people keep their status as quiet as possible but now I wonder if all the secrecy is just adding to the stigma.  People with any other disease don't hide it nor do they feel like they have to, why should people with HIV and AIDS.   It would seem that hiding the diagnosis indicates that it is somehow shameful and embarrassing.  Now I am just asking so please don't climb all over me.

Offline edfu

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Re: What do you think?
« Reply #1 on: August 07, 2009, 07:03:12 AM »
Since most  cases of HIV are acquired through sexual activity, much of the stigma is the result of a sex-phobic culture.  Yes, most people willingly admit to having diabetes or high blood pressure, etc., but most of these illnesses are not infectious, either.  On the other hand, most people do not go around talking about their gonorrhea, syphilis, herpes, chlamydia, etc.  A large number of other cases are related to intravenous drugs, and that is not acceptable by society at large.  It is the activities that result in HIV infection that cause the stigma, not just the HIV.   

Another reason, because so many gay men are HIV-positive, is homophobia.  To admit to being HIV-infected is to be suspected of being gay, and if one is not already out as gay, it becomes a double coming out:  as gay and as HIV-positive.  Coming out as gay can be as difficult for some, even today, as admitting to being HIV-positive.  Many gay men did not come out to their families until they told them about their HIV.   

And, of course, HIV discrimination is still widespread and dangerous.  It can still seriously affect employment, interpersonal relationships of all kinds, and insurance.  Secrecy is not adding to the stigma; it is the stigma that is still causing the secrecy. 



 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Ann

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Re: What do you think?
« Reply #2 on: August 07, 2009, 07:56:51 AM »
Hi Stormy, good question. And I agree with your assessment. I do have to wonder though, if you're asking for validation of any pressure you may be putting on your brother to be more open, or if you've disclosed his status to people without his permission. Even though I'm an advocate of being out about hiv status, I'm also an advocate of people deciding for themselves how open they want to be. All I can do as an advocate of the former is to live an open life myself as an example of just how possible it is.

I wrote a blog about this subject a few years ago. http://blogs.poz.com/ann/archives/2007/02/

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Stone

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Re: What do you think?
« Reply #3 on: August 07, 2009, 12:38:13 PM »
Hi and thanks for the responses.  No I absolutely do not think my brother should be more open as it would destroy him both professionally and personally.  Nor would I ever disclose his status to anyone for any reason.  It is not my story to tell.  The fact that he can't disclose however is adding to his stress level and making it difficult to move forward.  He can't date anyone that runs in the same circle or may know someone in his social circle because he would have to disclose prior to any sexual activity and what if there is a bad breakup or this person starts to run their mouth?  He gets so scared that he tanks the relationship before it can even get started.  It breaks my heart that it has to be this way.  Another reason I ask is because I work in an ER and I had two recent incidents that really bother me.  One was someone that came in from another facility on contact precautions.  Contact precautions mean that we have to gown and glove prior to entering the room and have dedicated equipment for the patient.  They are used for things like antibiotic resistant bacterias and shingles.  After the medics left (and starting the precautions) I reviewed the chart and saw there were no conditions present.  I contacted the other facility and was told the precautions were in place based only on the HIV status.  WHAT?  Is this 1985?  Another was someone that came in for testing after being informed that a former partner tested positive.  I spent the majority of my time providing support and education regarding confidentiality and the fact that no one has to know if they did indeed acquire the virus.  It seems cruel that someone has to worry so extensively about social implications when there is a possibility that they may have a chronic illness.  More to the point, it pisses me off.    

« Last Edit: August 07, 2009, 12:44:47 PM by stormynd »

Offline megasept

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Re: What do you think?
« Reply #4 on: September 08, 2009, 08:10:07 PM »
Great question. Stigma is a big deal, a really big deal.

I won't speak for women, or males who acquired HIV thru transmission other than sex with men. I am gay, POZ for 19 years. I was "out" sexually more than a decades earlier, so that's a non-issue for me.

In gay communities (that includes online) it seems perfectly acceptable to refer to some people as "clean" or "disease free" (unlikely stretch for most) leaving POZ to be "dirty" and "diseased". This is among gay males. , after 25 years of epidemic ravaging our own demographic.

Most people in my area (US) view disease through a moral compass. Unless the non-HIV infected reject that they have to believe it's perfectly fine for two men to have consensual anal sex. "Innocent victims" of this or that disease, "courageous" fighters against breast cancer, but what about Hepatitis?  I think it's really important we oppose the obsession with how people get sick, instead of helping them get well.

Sure, it would help socially to be frank about our status. in my own case it definitely would have meant less employment, beyond the one lost opportunity, one near-firing (for going on TV as a homosexual), and one-on-the job harassment situation I did experience. It often hurts POZ, individually, to be open. I do like to confront anti-HIV bigotry...With strangers who really can't do me any harm. I have no plans to come out as POZ to my many neighbors, for example.

Another issue is I like my privacy, including sexual and medical privacy. But since POZ are pariahs socially, I try not to allow those personal preferences to cloud the issue (an easy excuse for me) you bring up.

My Ex- and what, a billion others(?) do not remotely live freely in relation to sex and the law. So if I am labeled, he might suffer the consequences abroad. I do think about that when I speak publicly (in print), especially in this Forum. I don't worry about this in face-to-face situations.

I think it's a "damned if you do and damned if you don't" thing. I am leaning towards less intimacy with those that know I'm POZ but over many years have shown little care about me, while increasing my openness in general. I've only got one life, and I'd prefer not to bend any more to accommodate people's ignorance nor prejudices. Great question!

 8)  -megasept



« Last Edit: September 08, 2009, 08:11:51 PM by megasept »

Offline Stone

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Re: What do you think?
« Reply #5 on: September 09, 2009, 02:21:01 PM »
Thanks for all of your replies.  I guess I just get so frustrated with this issue and want to do something to fix it.  We have made some progress, but it seems like we should be so much farther by now.  After I posed this question, I watched a documentary "25 years of AIDS" online that was produced by Frontline in 2006 and was just appalled at how people were treated in the early days of this illness and still are in some countries.  It is a long program (2 parts about 2 hours each) but it was so unbelievably interesting I actually stayed up until 4:30 in the morning watching it.  I gained a new perspective on how much politics and money played a role in the spread of HIV and why the roots of the stigma are so deep seeded.  Still angry but more educated now

Here is the link
http://www.pbs.org/wgbh/pages/frontline/aids/

Offline mecch

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Re: What do you think?
« Reply #6 on: September 09, 2009, 02:47:27 PM »
HIV+ people weigh the cost and benefits of
A) discretion/secrecy
B) disclosure in different environments

Your brother may eventually decide that some disclosure socially and in the circle of available love partners is inescapable and offers benefits - (social support, and the possibility of a new love).  He'll have to see that he can trust people to respect his professional identity and he'll also have to come to terms with the risk that once the cat is out of the bag,,,, you can't control everything.


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Stone

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Re: What do you think?
« Reply #7 on: September 09, 2009, 04:15:29 PM »
Thats the problem mecch.  He can't trust them.  To put it out there means putting everything on the line and believe me I am not being a drama queen here.  He lives in a backward thinking small town environment and would lose his business, home, everything if his status got out.  The only way he is going to be able to get another partner is if he can meet someone that is not from the area, doesn't know people in the area, and doesn't know people that are in the gay community around the area.  This is not only a difficult task but creates problems in terms of the logistics of maintaining a relationship.  To be honest I think he has just decided it is too difficult and too scary so he has just given up and resigned himself to a life alone.  It breaks my heart. 

Offline Puckslinger

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Re: What do you think?
« Reply #8 on: September 09, 2009, 04:46:01 PM »
Stone

I tested positive in 1992. And  I started keeping my HIV status a secret because my children were in elementary school and the stigma was something I didn't want them to have to bear. Kids can be mean enough; without me providing more ammunition for possible abuse. I didn't want anyone teasing or taunting with belittling remarks about "Your daddy has AIDS."

I told my kids when they were in their early teens; and they have been very supportive.

My HIV/AIDS status is not something I wear on my sleeve. And the biggest problem it creates for me is when it comes to dating.

I go without rather than reveal my status to potential sexual partners.

I'm a heterosexual 61 year old man with AIDS. Every woman's dream date...Right?

I explained more about my situation in the first post I made at this website. If you're interested, you can read it here:

http://forums.poz.com/index.php?topic=28749.0

In case you are wondering: I acquired the virus sharing needles; something I've only done a couple of times; but, something I will always regret.

There are certainly people all over the world who have it rougher than me; children and adults who had no part in their getting infected. I knew I shouldn't have been shooting coke; but I took the gamble.

Now I just have to live with my mistake. But my family shouldn't have to suffer because of it.

Offline mecch

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Re: What do you think?
« Reply #9 on: September 09, 2009, 09:52:30 PM »
Thats the problem mecch.  He can't trust them.  To put it out there means putting everything on the line and believe me I am not being a drama queen here.  He lives in a backward thinking small town environment and would lose his business, home, everything if his status got out.  The only way he is going to be able to get another partner is if he can meet someone that is not from the area, doesn't know people in the area, and doesn't know people that are in the gay community around the area.  This is not only a difficult task but creates problems in terms of the logistics of maintaining a relationship.  To be honest I think he has just decided it is too difficult and too scary so he has just given up and resigned himself to a life alone.  It breaks my heart.  

Does not sound like a life then. More like a prison. HIV has turned his life into a prison.  
Tough as it may seem, he seems to have three choices:
1) if it is as you describe - he just stays in status quo - lives in his prison alone and fearful
2) lives like he did before he was positive, dates, discloses to potential lovers, and takes the risk of losing everything.  BUT HE might lose not much, less than in your doomsday scenario.  But then again, I'll take you at your word and believe that he could lose everything.
3) make plans to leave that small town and make a new life elsewhere, more hospitable, less "backward"

You seem to have fatalistic acceptance of choice 1).  You say your brother does as well.

Well the other choices involve hope and action and promise some change in life so somehow I think they are the only possibilities here.

Choice 2 seems the best psychologicially.  You assume better of people, you assume you will NOT lose everything.  Or maybe things will change, for the better and worse, together. challenges but rewards.
« Last Edit: September 09, 2009, 09:55:14 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Snowangel

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Re: What do you think?
« Reply #10 on: September 09, 2009, 10:57:55 PM »
Hi Stone!
I do agree that if everyone with HIV put it out there it would help the stigma but seeing that there is so much false or mis-information out there, it can hurt the individuals stepping up to the plate.

My experiences as a heterosexual positive white female have been that people assume that I was either a drug addict or a prostitute. I got infected from a boyfriend. When I was first going to support groups back in the late 90's, the other attendees couldn't believe I was infected at all, because I didn't look like them?  
I was working as an admin assistant to the GM and my HR office was right across from me, this was 99 or 00.  I was under a lot of stress, lost a lot of weight, my diagnosis got switched to AIDS.  I use to do the intakes for all our new hires and then pass them off to our HR women.  If someone came into her office, that she didn't think was "clean"  enough she would take out her lysol after they left and spray   everything in her office down and run(literally) to the bathroom and wash her hands. I used to laugh to myself and wonder what she would do if she found out about me.  That showed me that disclosing to her was out of the question, if I needed to take a sick leave and still have a job.

I have only disclosed to one girlfriend of mine. That is because she was being open with me and was engaging in some pretty risky behavior and I wanted to her to realize what could happen, if she wasn't careful. It still amazes me how many people think they can look at someone and know if they are positive or not.  I wish I could be more open about it but kind of like Puckslinger, I have 4 children, who are 11 and 6, and I don't want them subjected to any un-neccessary harrassment or cruelness.  My 11 year old knows of my diagnosis but none of my 6 yr olds do. My hope is that when my kids are older, I will be more outspoken about my status. If I can help one young person or anyone for that matter from not getting infected, it will be worth any discomfort I might feel.

As far as dating is concerned, what would it hurt if he put an ad in the poz personals?  Yes, he might have to do a lot of weeding but there is someone out there for him (and you too, Puckslinger :) )  He might not meet someone today or tomorrow or next month, but when he does he will have someone to talk to that he has something in common with, and that will mean a lot. It can't hurt to try, it's the internet, he doesn't have to put all his 411 out there to start with. He is lucky to have a brother like you that he can talk to.

Take care,
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline Puckslinger

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Re: What do you think?
« Reply #11 on: September 10, 2009, 02:41:35 PM »
Re:

'As far as dating is concerned, what would it hurt if he put an ad in the poz personals?  Yes, he might have to do a lot of weeding but there is someone out there for him (and you too, Puckslinger  :) )  He might not meet someone today or tomorrow or next month, but when he does he will have someone to talk to that he has something in common with, and that will mean a lot. It can't hurt to try, it's the internet, he doesn't have to put all his 411 out there to start with.'


Thanks for the suggestion and advice, Snow. I appreciate your optimism.

Offline Stone

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Re: What do you think?
« Reply #12 on: September 11, 2009, 03:05:19 AM »
Thanks agian for the replies.  Yes mecch I agree that he is currently living in a self imposed prison but how do you encourage someone to put everything on the line and just jump in?  If it doesn't work and he loses what little he has left then what?  I don't want to be responsible for that.  Moving is not an option as he owns his business.  To give you an idea of what he is dealing with, there are about 14000 people in the town and there is no need to use turning signals because everyone already knows where you are going.  He travels a distance for health care and has his medication shipped to him to protect his confidentiality.  I don't consider this a "fatalistic view" it is just reality.

Snow angle, thanks for the suggestion and this is a subject I have broached with him in the past.  There is only one problem (hope your sitting down for this) he doesn't know how to use a computer.  We are working on it but it is not coming easily.  I do have a question however.  Do you know if you have to post a picture on the POZ personals?  This would be an issue for obvious reasons but if it is not mandatory to post a picture I am going to try and broach this subject again.

Offline Snowangel

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Re: What do you think?
« Reply #13 on: September 11, 2009, 10:20:03 AM »
LOL, I posted an ad to find girlfriends in my area and never posted a pic, it is definately not a requirement. 
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline mecch

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Re: What do you think?
« Reply #14 on: September 11, 2009, 12:28:40 PM »
Is your brother mentally or physically handicapped?  Doesn't know how to use a computer?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Stone

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Re: What do you think?
« Reply #15 on: September 12, 2009, 02:12:29 AM »
LOL mecch I have asked him that many times.  He is incredibly talented and smart but doesn't have the patience to sit down and learn how to use it.  I even wrote out directions on how to access his email step by step for him.  He tried it once and something happened with the computer so he wasn't able to do it and hasn't tried since.  Drives me crazy that someone his age can't use a computer in 2009

 


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