Statistics and stigma

[keyite]

Just picked up a news story from a Danish newspaper. Apparently a big study of quality of life amongst the 5.000 diagnosed with HIV in Denmark revealed that:

- one in twenty hasn't told anyone at all about their diagnosis;

- one in five has told only two other people;

- one in three has told a maximum of five people;

- one in three hasn't told her/his parents;

- three in five hasn't told anyone at their place of work;

- more than one in three fear people are gossiping behind their backs about their diagnosis.

Don't know how well those trends translate to other countries, and I don't suppose those numbers really surprise me all that much, but it is very sad nonetheless. And there's always something particularly stark about statistics. People with, for example, diabetes or cancer wouldn't feel this level of need to hide away. Stephen Fry is right - the stigma is debilitating...

[404error]

Stigma is definitely the worst of it.  I'm always talking to people and many of them have the most out of date ideas when it comes to HIV, living with HIV and what these things entail.  While the stigma is bad, I can't honestly say that I am free from stigmatizing others living with the disease.  I'm perhaps more critical of those who got the disease through IV drug use than I should be.  Perhaps it's because I don't want to be lumped in with them?  Perhaps it's because they appear to make up the bulk of PWA's living in my area?  Perhaps it's because HIV is just one of the many, many problems that these people have?  It's likely a combination of it all.  I just hate being associated with an identifiable group with whom I have no affiliation.

[Matty the Damned]

I just hate being associated with an identifiable group with whom I have no affiliation.

But you do have an affiliation with them. You have HIV infection just like they do. The ties that bind and all that . . .

MtD

[Dachshund]

I just hate being associated with an identifiable group with whom I have no affiliation.

I guess some might call what you are feeling, guilt by association.


edited to add:

If you are gay people almost expect you to be HIV positive, if you are straight and HIV positive it helps people deal if they think you are gay. It ain't easy being green.

[404error]

But you do have an affiliation with them. You have HIV infection just like they do. The ties that bind and all that . . .

I suppose I'm also human and require; oxygen, food, and water to survive.  I guess I've also had a common cold or flu.  I also communicate via written and spoken language.  While I do have HIV as do they, that is where the similarities end.

[Matty the Damned]

Yeah, but that's not how polite society sees these things. To good decent negative folk, you, I and Aunty D are just three more AIDS scumbags, with nothing to distinguish us from the druggos.

Funny how these things work.

MtD

[404error]

I wish I could honestly say that I didn't care about the opinions of polite society because I identify more with this segment of the population than I do with IDU's for example. 

It would certainly make living with HIV a lot easier...

[emeraldize]

edited to support the thread

[Matty the Damned]

I identify more with this segment of the population than I do with IDU's for example.

It might surprise you to learn that a lot of "this segment" are or have been injecting drug users. Not every IDU is the same as the people you've encountered in BC and probably those you have encountered are not as bad you think they are.

MtD

[404error]

It might surprise you to learn that a lot of "this segment" are or have been injecting drug users. Not every IDU is the same as the people you've encountered in BC and probably those you have encountered are not as bad you think they are.

You're right.  Not all IDU's are like I have made them out to be.  Some are fully functional and manage to hold a balance between work and play (so to speak)  It could just be that the ones I am most often exposed to are not the ones who would fall into this category and it is for this reason that I don't often remember that.

[otherplaces]

I was chatting on the phone once with a lady I met on the grand social networking site POZ.COM, and right off the bat she wanted to know how I was infected.  Apparently she didn't want to talk to an IDU.  Being in the most stigmatized segment of society and then turning around and inflicting the same BS on your own people is ridiculous.  ((ROLL EYES))  Needless to say we're not still in touch.

I have no doubt I probably work with an HIV+ former IDU at my job, but I'd be hard pressed to tell you who they are, nor could I care less.  Funny how that works.

Brian (who only hangs out with infants infected via breast feeding)

[milker]

People with, for example, diabetes or cancer wouldn't feel this level of need to hide away. Stephen Fry is right - the stigma is debilitating...

Well, do we have the same study for people with diabetes and cancer?

Milker.

[keyite]

Well, do we have the same study for people with diabetes and cancer?

Good point. I guess the reason I think the findings for those type of disease would be very different is that I'm in the grip of the stigma as much as others appear to be. I've told less than five people, I've told no-one at work and I still haven't told my parents. Had it been diabetes or cancer I was diagnosed with just over a year ago then my parents would definitely have been informed by now.

[wishihadacat]

"Some IDU's are fully functional"? Gee! I've heard that some gay men are fully functional too!

Upallnight, what planet have you been living on?  The fact that you would disassociate yourself from IDU's or former IDU's suggests not only a moral judgment that neither you nor anyone else has the right to make, but also that you are ashamed of the fact that you are gay.

When we start subcategorizing ourselves as either IDU HIV'ers, Gay HIVer's, former IDU HIVer's, bisexual HIVer's, or "innocent women" HIVer's, we do more harm to our community from within  (and it IS a community, whether you acknowledge that or not) than those who stigmatize us from without.

I do not wish to start a flame war here, but you need to think before you post statements like that.

[Dragonette]

I think comparing gays to drug addicts is a disservice, why would you want to or need to identify with everyone who has HIV on this planet? I don't judge anybody for becoming addicted but once they are I'd stay away from them until they recover. I have seen to many people go down that route, so this opinion is not based on the media but on my life experience. The HIV is not the problem, but the behaviours that drug addictions often generate are. I feel sorry for them though and want them to get better, but as long as they are practicing addicts I'd stay away.

I don't identify with a guy who got infected from some Albanian sex slave locked up in Europe or some poor girl from Russia that was smuggled in thru the Egyptian border to Israel and forced to have sex with 50 men a day (that is what prostitution in Israel is mostly like). Sorry, I just don't (and a few of the hetero's in Israel were infected that way).
This kind of guy (I've seen a lot of them in Asia, 40 y.o men walking around with street kids in Cambodia and bragging about their visits to brothels where young girls are literally kept captive b/c they were sold by their family to pay a debt), I couldn't care less about. There was a TV program in Israel a week ago about men who have girls they sponsor in Kenya, the girls are like 13, 15, 18 and they pay them a dollar a week and spend months at a time there. You think if someone like that gets HIV I'd identify with them or feel sorry for them? Fuck that, as far as I'm concerned I don't care if they never recieve treatment.

[milker]

what's IDU?

[Matty the Damned]

Injecting Drug User.

But you already knew that, so cut the crap.

MtD

[milker]

Injecting Drug User.

But you already knew that, so cut the crap.

MtD

Thanks. And no.

[leatherman]

When we start subcategorizing ourselves as either IDU HIV'ers, Gay HIVer's, former IDU HIVer's, bisexual HIVer's, or "innocent women" HIVer's, we do more harm to our community from within  (and it IS a community, whether you acknowledge that or not) than those who stigmatize us from without.

I don't quite agree with that. although I do understand that it helps us all to band together, as we have a similar disease; but different situations require different help and counseling.

LTSs have different issues than the newly diagnosed. Women vs. men. Gay vs. straight. etc. Why here on this site is a board for women only. On another thread it was mentioned (by milker I think) of a PozHet group for hetero HIVers whose issues are different from mine as a gay man.

And just a note to the original poster:

People with, for example, diabetes or cancer wouldn't feel this level of need to hide away.

In the early 70s, people with cancer did "hide away" too. Back then having the "big C" would get you stigmatized just as much as today saying you have HIV. There's always a disease du jour that is the bane of society.

[Miss Philicia]

This is a rather offensive thread overall and I don't know how I missed it yesterday.  I think that's all I will add at this time.

[Iggy]

Just picked up a news story from a Danish newspaper. Apparently a big study of quality of life amongst the 5.000 diagnosed with HIV in Denmark revealed that:

- one in twenty hasn't told anyone at all about their diagnosis;

- one in five has told only two other people;

- one in three has told a maximum of five people;

- one in three hasn't told her/his parents;

- three in five hasn't told anyone at their place of work;

- more than one in three fear people are gossiping behind their backs about their diagnosis.

Don't know how well those trends translate to other countries, and I don't suppose those numbers really surprise me all that much, but it is very sad nonetheless. And there's always something particularly stark about statistics. People with, for example, diabetes or cancer wouldn't feel this level of need to hide away. Stephen Fry is right - the stigma is debilitating...

And yet there is a thread questioning the need to have counseling and education be tied with testing for HIV?

 

[thunter34]

edited to support the thread

Dagnabbit, Em!  I'm gonna have to start making a practice of quoting all of your posts immediately.  You've got a bent for going back and editing / erasing your posts an awful lot.  You know I love ya, but that's a personal peeve of mine.  Phooey.

 

[Dragonette]

This is a rather offensive thread overall and I don't know how I missed it yesterday.  I think that's all I will add at this time.

Philly, I really want to say that I have nothing but respect for people who overcome addictions, I know how incredibly hard it is. The problem is when people are still using, it's hard to interact with them. I don't condemn them, but I would not go to meeting with actively using addicts. It would not help me, that's for sure.

About the johns (specifically the ones of the most expoitive end of the sex industry), well there is just so much of that going on in some countries. I hated them before, I used to go to work and see young girls just locked in, behind bars (yes it's that bad, but the police are clients too and do nothing much), or when I worked in Japan, see the Filipinas lined out in the dead of winter in the cold and read about how they were kept and how they are threatened, seen it in other places too, so why should I feel sorry for these kind of guys if they happen to catch the same bug that I did? I had a WW PM me about visiting brothels in Cambodia and how he felt sorry for the poor young girls there, but still got drunk and did it. I tried to reason with him and help him break out of that pattern, but at the end of the day, I consider that a sex crime.

[David_CA]

And yet there is a thread questioning the need to have counseling and education be tied with testing for HIV?

 

Finally, we agree on something!   

[404error]

"Some IDU's are fully functional"? Gee! I've heard that some gay men are fully functional too!

It appears that you completely missed the point here.   I meant found the balance between addiction and still being able to hold a job.  My uncle was a junkie.  He became addicted to heroin after my other uncle (his brother) died of AIDS in the early 90's.  He knew that he had to take his "medicine" before work so he woke up well before he needed to to get everything done, went to work (delivering mail) and knew he had to be home at a certain time for his next fix.  He eventually OD'd in a friends car outside some slum bar in cracktown.

Upallnight, what planet have you been living on?  The fact that you would disassociate yourself from IDU's or former IDU's suggests not only a moral judgment that neither you nor anyone else has the right to make, but also that you are ashamed of the fact that you are gay.

I disassociate myself from IDU's because I can.  I do not "chip"  I do not have tracks.  I have never fenced stolen property to score that next hit.  I have never left my used paraphanelia strewn about the city streets.  I have never harrassed the general public at large for "spare change" or "just a few dollars"  And as far as the "ashamed of being gay" thing goes, you're way off base Dr. Phil but thanks for coming out (so to speak...)

When we start subcategorizing ourselves as either IDU HIV'ers, Gay HIVer's, former IDU HIVer's, bisexual HIVer's, or "innocent women" HIVer's, we do more harm to our community from within  (and it IS a community, whether you acknowledge that or not) than those who stigmatize us from without.

What do you mean "when we start"?  HIV'ers were subcategorizing themselves well before I was ever infected and then later diagnosed.  Here's a link for the biggest HIV organization in Canada's largest city.

http://www.actoronto.org/website/referrals.nsf/ACTsubarea

I do not wish to start a flame war here, but you need to think before you post statements like that

No, no I do not.  You need to learn that on the internet you're not always going to agree with everyone and accept that as fact.

[Dachshund]

Up, you may not like it, but this is the way it works. Through your own actions you became HIV positive and with it comes the joys of stigma. Whether you like it or not people want to pidgeon hole you. They may not say it, but they think it, "he's not a drug addict so he must be gay." Now this is just my bit of Dr. Philism, but I think you're more upset that folks think you might be queer. In fact I think you could give a rat's patootie about the IUD issue. It's a hard cruel world out there baby, just ask any woman or homo you know.

[Miss Philicia]

Philicia just now went to the local HIV Youth Empowerment offices (targets disadvantaged gay kids kicked out of their homes... you know the drill) and donated seven moths of un-used fuzeon syringes so that more people could get high.  Frankly I'm glad that I can now reclaim an entire corner of my 1-bedroom apartment.

[Jeff64]

I have told only my partner, my parents and his parents.

My work has no business knowing ANY of my health issues.

Jeff

[wishihadacat]

The lesson that might be learned from some of the more vitriolic replies in this thread is this:

We are all here because we are all infected with the Human Immunodeficiency Virus. Some of us became infected because we engaged in behavior that carries a risk of contracting that virus, and some of us did not. Either way, this is a positive COMMUNITY (and for whatever its worth, folks, the captions above and below do read
"AIDSmeds/POZ Community Forums") and in my view it is not our best collective interests to point fingers at each other. Some of us have health issues caused by HIV; some of us have financial issues because of HIV; some of us have personal issues because of HIV. But we all suffer from the same viral infection and the same social stigma, and until we stop distancing ourselves from each other we can hardly expect the rest of society to stop stigmatizing us.

When I chose to explain to an uninfected person how I became HIV positive I usually say that 28 years ago I did something I shouldn't have done with someone I shouldn't have done it with, and I leave it at that. Don't judge me because of my past actions; judge me by who I am now and the actions I take now. Judge me not because of the friends I may once have associated with, used drugs with, or my sexual preferences. If I am not now living my life with fairness towards others, integrity, and respect for the truth, then I will accept responsibility for it, but I will not accept any prejudice or prejudgment for being HIV positive.

[Denver Toad]

If I am not now living my life with fairness towards others, integrity, and respect for the truth, then I will accept responsibility for it, but I will not accept any prejudice or prejudgment for being HIV positive.

Bingo - We've got a winner. It doesn't matter how we got here. Yesterdays are but a memory and nothing can be done to change what happened. It's in the here and now that I live my life. It's the now, not the how that matters. Living anywhere else shorts one of the joys of today,

[otherplaces]

You know, you don't have to like 100% of your 45 million HIV+ brothers and sisters.  But you should judge them for who they are, not because they belong to or belonged to subcategory X.  It makes you no better than those who do the same to you.