AIDS vs Advanced HIV - time to lobby for a change?

[Delby]

Why do we still use the word AIDS to describe advanced HIV or that latter stages of HIV? It is my belief that there is huge stigma associated with the word AIDS. I believe that as a community, we are indirectly supporting this stigma, by continuing to use the word AIDS.

It is partly due to the hangover we still suffer from those dreaded (but necessary) tombstone adverts that we faced in the 80's. AIDS became a very fearful and dreaded words. Although the general public know that people with HIV can go onto to develop AIDS, it is a word that drives fear into most peoples minds. I believe there is far too much stigma and connotation attached to the word now.

What is AIDS? It's not a different disease to HIV, it's just a stage. When someone has cancer and they're in the last stages, they have either terminal or advanced cancer. It is my belief that we need to get rid of the word AIDS completely and replace it with Advanced HIV.

We are only fueling stigma by continuing with it's usage. Even as a HIV sufferer, how many of you are scared of 'AIDS'? Like it's some other type of disease within it's self. Imagine how the general public feel about it. Words have great connotations and people associate images with words. AIDS was associated with an era where we were treated worse than lepers. It's time for a change.

Delby

[Jeff G]

It will be interesting to see what others think about this but to my mind what we call it has nothing to do with stigma .

[Delby]

It will be interesting to see what others think about this but to my mind what we call it has nothing to do with stigma .

I think that what we call it has everything to do with stigma. Granted the word AIDS isn't the only reason why we are stigmatised, but the word 'AIDS' has so many bad connotations from the early days. How many other 4 letter words carry such weight. What we call things are important and have a huge impact on people. Think of the 'N' word. You may say that word has nothing to do with racism, yet it has everything to do with racism. Words matter a huge deal.

I live with HIV and I know as a patient I would of been much more comfortable being told that if one day your disease progresses, then it will do just that - it will 'advance', rather than being told it will metamorphosis into another disease called 'AIDS'. It's not another disease. Same disease, but different stage. That's all. 

[mecch]

AIDS has its history. Sure there is stigma about the word but mostly its about the disease. The word means Acquired Immune Deficiency Syndrome and describes a sickness so its a pretty good term. As we know, it was a diagnosis, and often times still is.  Its a dire situation, then and now.  (Technicalities aside, about the fact that the diagnosis continues even if the immune system of someone with AIDS is rebuilt.)

HIV is the virus.

AIDS is the word known around the world, even in countries where the language has other terms, such as SIDA in francophone cultures. I don't think its up to the HIV+ population to waste time trying to change a very entrenched linguistic choice. 

Why not work on education to tell the full story of all the possible outcomes of getting infected with the HIV virus.  One of which might be an AIDS diagnosis, or not.

Living with HIV in the world means coming to terms with complex and sometimes contradictory information.  It is a incurable deadly disease, and it is a "chronic manageable condition".  Everyone needs to understand the basics of both these messages. That's enough challenge.  As well as some basics of the political-economic conditions, and cultural and legal contexts, that explain why there are so many different outcomes.  That is how stigma can be reduced.  IMO 

So, own the word and work with the situation. Eventually the information will spread about all the outcomes of being infected with HIV.  HIV+ people do not have a magic wand to change a global linguistic choice AND to erase history.  Let alone what people feel about STDs.

[2tcells]

I have seen 3 doctors the younger one says they dont use the word aids anymore it is advanced hiv but in the hospital and my new doctor which both are in ther 60s call it aids. I personally like saying aids it flows of the tongue better than hiv and much better than advanced hiv. They should change it to a word not letters so it flows better like adhive or something if there going to change it

[Delby]

I have seen 3 doctors the younger one says they dont use the word aids anymore it is advanced hiv but in the hospital and my new doctor which both are in ther 60s call it aids. I personally like saying aids it flows of the tongue better than hiv and much better than advanced hiv. They should change it to a word not letters so it flows better like adhive or something if there going to change it

With respect you have missed the point of this thread. I am not discussing how nice the word sounds and how well it 'rolls off the tongue'. We are debating its meaning and connotation.

[GSOgymrat]

Perhaps AIDS will become the archaic term for advanced HIV disease the way consumption became tuberculosis.

[mecch]

Delby maybe I misunderstood your discussion as well, due to the "we".
If you are advocating that the medical establishment change the terms, that is good, and I think it is generally happening slowly.  There are also legal context where change is in process, or proposed. 

If the "we" is the entire world, HIV- and HIV+, then I think the term AIDS is entrenched and will only change over time if ever.  France has their Académie that decides what to call everything. The world doesn't have such a linguistic institution....


If you meant "we" HIV+ people, well, we can only do so much about a few billion brains, right? But lots of HIV+ people do teach out these matters.

One way to look at it, imo, is that a lot of what people fear when they hear the words AIDS is true, rational. But its only half the story.  And people are ignorant about a lot of things about AIDS and about HIV so just provide the information.

Cancer didn't need to change its name for the stigma attached to it to fall.

And anyway, its only a partially appropriate comparison.  Because HIV is more often than not an STD and that is a pandora's box of challenges...   Mostly I cynically believe, that most of the people who put stigma on AIDS, HIV, HIV+ people because its a dirty scary STD, don't really care what term would be used. Dirty and shameful is dirty and shameful. Change the name to HIV doesn't matter.  And how much energy to waste on haters, anyway.  (Not that this is the only context, in your discussion, of course!) 

[GSOgymrat]

And anyway, its only a partially appropriate comparison.  Because HIV is more often than not an STD and that is a pandora's box of challenges...   Mostly I cynically believe, that most of the people who put stigma on AIDS, HIV, HIV+ people because its a dirty scary STD, don't really care what term would be used. Dirty and shameful is dirty and shameful. Change the name to HIV doesn't matter.  And how much energy to waste on haters, anyway.  (Not that this is the only context, in your discussion, of course!)

Agreed. HIV is associated with sex and therefore there will always be considered shameful and impure to some because there will always be people who consider sex a lower, shameful behavior. Just think of the difference in attitude some people have between acquiring HIV through a blood transfusion versus anal sex.

[Delby]

Delby maybe I misunderstood your discussion as well, due to the "we".
If you are advocating that the medical establishment change the terms, that is good, and I think it is generally happening slowly.  There are also legal context where change is in process, or proposed. 

If the "we" is the entire world, HIV- and HIV+, then I think the term AIDS is entrenched and will only change over time if ever.  France has their Académie that decides what to call everything. The world doesn't have such a linguistic institution....


If you meant "we" HIV+ people, well, we can only do so much about a few billion brains, right? But lots of HIV+ people do teach out these matters.

One way to look at it, imo, is that a lot of what people fear when they hear the words AIDS is true, rational. But its only half the story.  And people are ignorant about a lot of things about AIDS and about HIV so just provide the information.

Cancer didn't need to change its name for the stigma attached to it to fall.

And anyway, its only a partially appropriate comparison.  Because HIV is more often than not an STD and that is a pandora's box of challenges...   Mostly I cynically believe, that most of the people who put stigma on AIDS, HIV, HIV+ people because its a dirty scary STD, don't really care what term would be used. Dirty and shameful is dirty and shameful. Change the name to HIV doesn't matter.  And how much energy to waste on haters, anyway.  (Not that this is the only context, in your discussion, of course!)

Of course not Mecch. I don't expect to get up on my soap box and change the language used by billions worldwide. You are correct in saying, I was referring to the medical institutions, from Doctors, nurses, researchers, lobbyists, publications, governments etc. It's a bottom up change. The world will never be banished. Unfortunately it is permanently etched into our vocabulary.

Yes the stigma will always be there. Where there is shame, there is stigma. There will always be shame when it comes to contracting STDs. Right or wrong, it's there and we have to live with that. This disease will never be treated in the same way as cancer or diabetes. I accept that.

But the words AIDS carries many stigmas. Not just for the general public, but for the afflicted. It is unnecessary and we don't need to call 'advanced HIV' AIDS.

[Jeff G]

How is changing the name going to change anything ? . If it were that easy I would be for it but it is not .

[geobee]

I think it's useful to have two terms. 

HIV is chronic, manageable. 

AIDS means my TCells are below 200, I need Bactrim or another prophylactic, I probably have a high VL, I'm at a much higher risk of OI. 

What I'm trying to say is that the different terms would provoke, in me at least, a different level of response and urgency about my care.  That's important. AIDS is a scary word -- and it's supposed to be.   

Also, HIV doesn't necessarily "advance" to anything.  When I hear "advanced HIV" it makes it sound like a progressive disease.  As in "sooner or later, everyone with HIV will have advanced HIV".  And that's just inaccurate.  At least, I hope so.   

[OneTampa]

I find this discourse rather interesting fueled by rightful personal energies.

It brings to my mind the following 60's Salon retrofitted bit (imagine the syncopated finger snapping in the background):

Bill shaking his spear:  "A rose by any other name smells just as sweet."

My late Mother: "Don't think you can piss on my head and call it rain."

AIDS/HIV: Stigma, Hate, Sex, Shame, Betrayal, Shun, Death, Hope, Life, Survival, Caring, Forgiveness, Triumph, Family, Love, World.

Just my out of the box observation as someone diagnosed with ARC (AIDS Related Complex) 29 years ago and given at most 2-3 years to live at that time.

Best.

[wolfter]

How's come we no longer call it the queer plague?  That summed it up pretty nicely at first.

Calling it advanced HIV progression is too confusing as HIV is simply the virus.  I earned my AIDS and I demand to keep the title. 

[buginme2]

I understand where u are coming from.  But have some exceptions.

The medical community has pretty much dropped the term as its not as relevant of a "diagnosis" as it was pre 1996.  Sure a person today who has a cd4 count less than 200 has "AIDS" but then when they take meds and it goes back up to normal do they no longer have "AIDS" and now just your garden variety HIV.  You can see how someone could bounce between AIDS and HIV every other month while clinically they are stable. 

In addition, medically speaking other similar diseases such has HEP-C dont change their name as the disease progresses.  Its pretty much only HIV that does that..its special.

As far as the HIV community dropping the word...Many already have.  Some won't and are holding on to it because it has meaning to them.  For someone who was diagnosed with AIDS in the 80's or 90's it means something to them.  Just like you say the word has some meaning to you it also has a meaning to them.  It would be unfair and not very respectful for someone else to tell them that they need to use a different word to describe their disease.  They had AIDS, thats what it was.

It is also for good or bad part of history and specifically gay history.  I dont know if you are gay or not but AIDS is a giant part of our shared history that appears many are trying to sweep under the rug.  The stigma associated with the disease has not only gone from personal experiences to an entire community.  Would changing AIDS to HIV sort of dismiss the tragedy that our community experienced?

So, I understand where you are coming from.  But....theres too much history in my opinion to change the word.  With all of its meaning, good or bad its part of our community history and shouldnt be forgotten. 

 

[drewm]

This question is perplexing. I recall being diagnosed with AIDS and then being told that my numbers had "rebounded" to HIV levels where at one point we would not have started treatment yet if this was the initial set of labs.

[Joe K]

Though the term AIDS seems somewhat antiquated, it has a very definite purpose.  For decades, cases of AIDS, as opposed to just HIV have been used by governments to allocate resources for the HIV community.  The term was developed because there used to be a great difference in the resources required to treat AIDS patients, vs. just HIV patients.

AIDS is a definition of the state of your HIV disease and it was formulated to signify the great difference between being just poz or having AIDS.  Because it is defined, if I tell you I have AIDS, you have a pretty good idea of the state of my health.  If I tell you I have AIDS you get a standardize description of what ails me.  If I tell you I have Advanced HIV, you don't know what that really means, because it has no standard definition.

Personally, the idea that you can reduce stigma by dropping the word AIDS will do little or nothing to change any stigma.  Stigma comes from fear of the unknown or hatred of others not like us and not simply from the terms we use.  The way to change stigma is to educate folks and to live our lives openly, if possible, so people see poz folks as having a disease and not some character flaw.

Given the challenges of global HIV infections and treatment, I would hate to waste one ounce of resources, changing a term that has little use outside of the HIV community.  The term "AIDS" has become woven into the HIV lexicon over three decades of use and rather than playing semantic gymnastics with it, over time, it's use will diminish as we further define the stages of HIV disease.

Joe

[wolfter]

Bugs, just because your number increase to a normal range doesn't necessarily you mean you no longer have AIDS.  I still have cognitive loss, fucked up vision and hearing and a host of other little post AIDSY stuff.

I personally don't care what the next generation calls it, I know what I've had for 25+ years and I can recall the letters.    It took me forever to get used to referring to my soldiers as CD4's instead of Tcells. 

[AusShep]

... It took me forever to get used to referring to my soldiers as CD4's instead of Tcells.

Lol.  I know, and MSM instead of gay or bi, STI not STD, and I just saw in the CDC HIV stage definitions that they've changed PCP to PJP, I mean WTF I'll never keep up.

Pneumocystis jirovecii (previously known as “Pneumocystis carinii”) pneumonia

As far as the topic at hand, I think AIDS has it's usefulness as far as defining when someone was first diagnosed or the current state of their health.  Changing it to something else "nicer" would just add more confusion.

Holding onto the AIDS Dx forever because you've had an OI or low CD4 at some time in the past is more of a technicality to me, although accurate. The new CDC surveillance info says the stages for reporting can go up or down over time, but that stage at diagnosis and highest stage/date in the past is also relevant. 

[bocker3]

I don't think changing the term AIDS to something else is going to fight stigma.  Stigma is based on ignorance and/or fear - attach whatever name you want and you still get what you get.
Instead of spending energy on semantics, it's education and openness that leads to the ending of stigma.  Why is being gay so much more accepted today -- because people came out, didn't hide and showed more people that there was nothing to fear.  NO -- it isn't universal and there is still some stigma attached to being gay -- but it is far less prevalent (at least here in the US) than it used to be.

That is my 2 cents, anyway
Mike

[Jeff G]

I feel like I have have Aids everyday ... but I'm not hung up on the word . The first thing I thought when this was posted is this is the OP wants to redefine whats happening to him ... if he changes the name then he does not have to struggle with the stigma and problems associated with the disease and it will be different for him .

If the word Aids has so much stigma attached to it for you to handle personally as a condition you live with then how can changing it ever be meaningful to someone who does not . 

[Theyer]

Perhaps AIDS will become the archaic term for advanced HIV disease the way consumption became tuberculosis.

Was about to Post , saw this, realized had much more thinking to do.

[Jeff G]

If they repackage it they gonna wanna charge more for it .

Also ... If past efforts to address and reduce stigma has failed or has been hard to achieve then what and where are the shortcomings from the current approaches ? 

Are we where we should reasonable expect to be or can we do better ?

[wolfter]

So if the forums were renamed AdvancedHivmeds.com, would those who worry about stigma finally start posting true avatars?   

[2tcells]

Who cares what its called it still affects you the same way and you still got it the same way it will still have have the same stigma. I dont think hiv- people think of hiv+ people any different than people with aids besides they think the aids people have had hiv longer

[zach]

advanced aids, treated rough, free to a good home

[mecch]

Also, HIV doesn't necessarily "advance" to anything.  When I hear "advanced HIV" it makes it sound like a progressive disease.  As in "sooner or later, everyone with HIV will have advanced HIV".  And that's just inaccurate.  At least, I hope so.   

A very good observation.

[Niceguy2013]

I agree.  I was disappointed when the show "Looking" breached the subject and one guy said something like, 'So neither one of us has AIDS.' I think the show could have used this scene to address the topic of HIV stigma.

I ran into a situation recently where someone was referring to an in home HIV test as an AIDS test. People are already nervous enough getting tested... And language like this makes it even worse.

[wolfter]

I agree.  I was disappointed when the show "Looking" breached the subject and one guy said something like, 'So neither one of us has AIDS.' I think the show could have used this scene to address the topic of HIV stigma.

I ran into a situation recently where someone was referring to an in home HIV test as an AIDS test. People are already nervous enough getting tested... And language like this makes it even worse.

How can we address stigma when we're so hung up on worrying about mere terms.  It is essentially an AIDS test since if you test positive for the virus and don't treat it, that's the illness that you'll develop.  Much like cancer screening. 

[skeebo1969]

So if the forums were renamed AdvancedHivmeds.com, would those who worry about stigma finally start posting true avatars? 

  With all due respect for someone who is extremely sensitive at times it amazes me how self righteous you can be. 


  I'll call mine acquiring felines disease.  A stage I have not attained yet.

[thunter34]

I like my special HIV that gets to change its name once it's really made its presence known in a big way for a person.  It's like the new title and corner office now that it has made its ambition to be large and in charge abundantly clear.  Advanced HIV Disease just doesn't seem to carry the same clout.  AIDS...all ominous, all capitals.  Your competition, the one you gotta match.  And I'm pretty sure if and when you find yourself laid out on a cot all hopped up and hooked up, you'll be feeling all four letters.

Besides...as one very wise soul said on here once upon a time about a topic of similar nature:  "If it was good enough of a label for Ryan White or Freddie Mercury or the millions of others it has claimed, it's good enough for me."

Or something to that effect.

[Theyer]

My first reaction was I ,ve had this so long I am being re-branded. For the last 6 years in the UK I have had to reapply for all the benefits that I had been awarded for LIFE  at least twice. For one year I thought I would have to move , losing my great support system , due to benefit changes. At the moment I am awaiting the outcome off a reappraisal off my ability to work.

 As a society, we needed to do this . Sad to say that there is abuse off the system , and after the start off successfull treatment , more and more people did not qualify for there for life benefits as they had been awarded when there life expectancy was expected to be reduced. And the cost off the drugs had to be paid for.

Then our Bankers roulette playing finally came out.

So regardless off what I call it Policy makers have been making differant groups out off folk with HIV for a long time. 

What I would appreciate , and think would make economic sense , is a catergory off Premature Medical Retirement, for those off us who would need a trip to Lourdes to establish working health and for whom when they do die have there loved ones  saying " Its amazing he lasted that long".

Then I could have a small bit off security and  my Government can stop wasting money processing those off us who in any sane world are not going to start working.

I cannot write much about the Stigma angle at the moment . Day to day its my Pride that has to deal with stigma, like when someone takes one look at me and gives up there disable priority seat for me , which I accept after a quick look round to make sure it is me, with as much independent grace as I can muster.But as this has been going on for 10 years I think I have the act down pat evan if the emotions still have to catch up.

I am not active on Pick up sites and think I,d be banned due to replying "your a retarded weeping pus bucket " to many off the posters with "clean" "healthy" "HIV free" or whatever the ignorant buzz words are at the moment.

WE in the LBTG community just need to look at how we have gained our advances, over the last 50 years , to have the blue print for tackling and reducing the stigma around HIV. Those not in that group have there own histories and the remaining rich WASPS wanna buy a piece off art?

[Almost2late]

Hey I have AIDS or Advanced HIV and you know what? It sucks! Doesn't matter what you call it, If I don't take my meds I'm fucked... I screwed around with prostitutes without rubbers, who I didn't know had "Advanced HIV" and maybe they didn't know... 12 years later, here I am!

When the ID doctor at the hospital said I had "Full blown AIDS" yeah that's right, he didn't sugar coat it either and I'm glad he didn't so I realized the severity of my situation..

And If it's changed to Advanced HIV, I don't think I'm gonna feel any better.. All I know is I'd rather be alive with AIDS then die of Advanced HIV related causes.. people should be scared of catching this shit.. I know I wish I was.. I thought I couldn't catch it if I was the one doing the screwing, damn was I wrong.

Someone here has a little saying.. "AIDS isn't for sissies"  I like that!

[Jeff G]

The folks who have been fighting stigma for 30 years are going to be slapping their foreheads when they realize it was all in the name .

[Theyer]

Lady Jane in Spain was talking about Hiverplus for 3 days till I tigged ,

[Ann]

When the ID doctor at the hospital said I had "Full blown AIDS" yeah that's right, he didn't sugar coat it either and I'm glad he didn't so I realized the severity of my situation..

And If it's changed to Advanced HIV, I don't think I'm gonna feel any better.

"Full-blown advanced hiv" just doesn't have the same ring, does it.

I've never had an "aids" diagnosis. Officially, I've always had fair-to-middlin', one-step-forward-one-step-back-one-step-forward, generic, bog-standard, hiv.

But some days, in the midst of a beam-me-up-Scotty-before-I-shit-my-brains-out, brain-fog-pea-souper of a day, I always say I'm having an "aids day".

That's what it feels like I'm having and yes, it rolls off the tongue so much easier than saying I'm having a "my-hiv-isn't-being-very-nice-to-me day". Every day in my life is an hiv day, so it's nice to have a specific name for those "special" days.

Fighting stigma isn't so much about the words used as it is about how we personally feel about our viruses and whether or not we own them, or they own us.

Fighting stigma is about being out about what we have, regardless of what you want to call it.

The more we hide, the more we have to hide.

[harleymc]

Delby I'm sorry If my continued existance offends you.

 I have Aids, I have had Aids since 1987,  My latest cd4 count was 140.  I don't give a sh!t if you don't like me still being on this palanet.
 Deal with it Aids peaople are still here and if your 'reputation' gets affected by me being still alive well suck it up, I show that you are not lethal.


OMFG  somebody with Aids for more than 25 years has a fabulous life without your permissions.

 Stigma doesn't come form just the Hiv neg community. Where stigma is the most vicious is within these forums.

 Suck it up denby i'm still alive and thriving.

[harleymc]

Yeah this IS personal.

[harleymc]

Maybe some of the pre HAART community want to have a "pre HAART but I've never had Aids" forum,  good luck to spreading stigma even deeper.

'fess up, who wants me dead?

[wolfter]

I am baffled by the self righteous comment but I'm not sensitive enough to let it bother me.

I have battled stigmas at GREAT personal expense.  When I finally accepted my sexual orientation and decided to live openly, it cost me dearly.  I decided early on to live in such a way as to show that gay people can in fact be decent caring people.  I had to teach by example and show people that gay people are not some sort of sexual deviant, ready to molest your children and steal their husbands.

Shortly there after, I learned of my status and felt an obligation to share that with my son's mother.  Thankfully, they both tested negative but it created more hurt and humiliation than any recently infected person will ever understand.  I fought the court system continually.  I had to have supervised visitation because of my lifestyle and the risks my illness posed to my son.

Every fucking motion ended with the same type of BS and I'd be crushed again.  My refusing to be diminished cost me a relationship with my son who barely acknowledges me.  This is a hurt that I've endured since I was my son's age. 

That gives you all a little insight to my views on stigma and continually wonder what those who cry "stigma" do to address and reduce it.  Had those in my generation not busted through the closet doors, the freedoms that so many experience now wouldn't have happened. 

I'm simply a gay man with a human virus and I do not internalize it to the degree that I feel less than.

wolfie

[Theyer]

Harley dear nobody wants you dead that I know off and I do not think that was Delby,s reason for the post .

As you know there are differences in the experience off being HIV+ , stigma to it and that's what Delby,s motive is I believe to explore it ,not in any way at all to wish you dead.

Now please do something kind for your self coz from reading your posts its not the best day for you.

[Theyer]

I am baffled by the self righteous comment but I'm not sensitive enough to let it bother me.

I have battled stigmas at GREAT personal expense.  When I finally accepted my sexual orientation and decided to live openly, it cost me dearly.  I decided early on to live in such a way as to show that gay people can in fact be decent caring people.  I had to teach by example and show people that gay people are not some sort of sexual deviant, ready to molest your children and steal their husbands.

Shortly there after, I learned of my status and felt an obligation to share that with my son's mother.  Thankfully, they both tested negative but it created more hurt and humiliation than any recently infected person will ever understand.  I fought the court system continually.  I had to have supervised visitation because of my lifestyle and the risks my illness posed to my son.

Every fucking motion ended with the same type of BS and I'd be crushed again.  My refusing to be diminished cost me a relationship with my son who barely acknowledges me.  This is a hurt that I've endured since I was my son's age. 

That gives you all a little insight to my views on stigma and continually wonder what those who cry "stigma" do to address and reduce it.  Had those in my generation not busted through the closet doors, the freedoms that so many experience now wouldn't have happened. 

I'm simply a gay man with a human virus and I do not internalize it to the degree that I feel less than.

wolfie

Cuddles.
Not everybody knows all that.
And its a lot to carry.
As has Thomas in his differant way , as have most of us to a greater and lesser extent.
Again cuddles and hugs
m

[wolfter]

Cuddles.
Not everybody knows all that.
And its a lot to carry.
As has Thomas in his differant way , as have most of us to a greater and lesser extent.
Again cuddles and hugs
m

Thanks.  I don't bring it to the forefront of my consciousness too often as it reignites the hurt and pain.
hugs back buddy.

[Jeff G]

This thread has made me remember why I began to live my life openly about having Aids in the 1980's . It was a time where stigma and hysteria over any thing HIV/Aids was the stone cold reality you lived with . We knew that to be labeled as a person with Aids meant many hardships and the end of life as we knew it . We knew we would not be welcome in some places and that we would lose our jobs and homes ... and in many cases family and friends .

We came out because we thought it might could help and we knew that hiding our HIV status meant that nothing was going to change . We didn't run away from Aids, we ran to it as a means to fight stigma and get the government to into action for treatments and research, it saved lives .

Its so true that we all benefit from the advances in treatment and testing no matter how long we have lived with with HIV so I can see where its hard for people recently infected
to understand why so many of the issues we faced back then are the same as we face today . I can understand why some people think that what we had to deal with is a thing of the past and no longer relevant to living with HIV today but the truth is some things never change and one of them is the only way to fight the stigma associated with HIV is through open discussion and education .   

If you want to create a feel good campaign and use the advances in medicine and treatment as a way to educate people by showing the contrast of how far we have come then I am all for it but you cant expect to affect any change in attitudes by running away from a word, it was true then and its true today .     

[Theyer]

Very good points indeed Jeff . This thread should be printed up in a National paper.

[thunter34]

The folks who have been fighting stigma for 30 years are going to be slapping their foreheads when they realize it was all in the name .

*giggle snort and accidental fart while laughing*


Once again, Jeff for the WIN.

[Joe K]

This thread has made me remember why I began to live my life openly about having Aids in the 1980's . It was a time where stigma and hysteria over any thing HIV/Aids was the stone cold reality you lived with . We knew that to be labeled as a person with Aids meant many hardships and the end of life as we knew it . We knew we would not be welcome in some places and that we would lose our jobs and homes ... and in many cases family and friends .

We came out because we thought it might could help and we knew that hiding our HIV status meant that nothing was going to change . We didn't run away from Aids, we ran to it as a means to fight stigma and get the government to into action for treatments and research, it saved lives .

Its so true that we all benefit from the advances in treatment and testing no matter how long we have lived with with HIV so I can see where its hard for people recently infected to understand why so many of the issues we faced back then are the same as we face today . I can understand why some people think that what we had to deal with is a thing of the past and no longer relevant to living with HIV today but the truth is some things never change and one of them is the only way to fight the stigma associated with HIV is through open discussion and education .   

If you want to create a feel good campaign and use the advances in medicine and treatment as a way to educate people by showing the contrast of how far we have come then I am all for it but you cant expect to affect any change in attitudes by running away from a word, it was true then and its true today .   

Jeff,

You nailed it perfectly.  The difference of the early days to our recent situation, while stark, remind us that as much as things change, they stay the same.  If you didn't experience the early years, your perspective on the stigma of AIDS is vastly different from those who were there.  It doesn't make our experience any more valid, however it reminds us of a time, when President Ronnie, waited until almost 7 years, until he first uttered the word "AIDS."

It reminds us of a disinterested American public and the Pope condemning the use of condoms to prevent the spread of HIV.  We remember how we had to pretend to die in the streets to get our funding.  We remember how people looked at us, what they said and how many had no problem, throwing their own children out on the streets, because of HIV.  We remember how each of us, had to grow a spine to face the world, a world where many people hated and detested us for simply being poz.

Do I think we should stop using the word "AIDS"?  It doesn't matter anymore... the word is already etched in our body, mind and soul.

Joe

[mitch777]

Picture it. Scicily Connecticut, 1982. No one knew at that point exactly what was killing us. No test available. A sure death sentence.  Months, maybe a year or two to live.

Well, I was working in retail at the time and when I got so sick during my seroconversion and had to leave work from Thanksgiving until early January. It sent strong alarm bells off with those I worked with. Upon my return a pregnant coworker quit her job. Stigma. Stigma from fear of the unknown.

While I was open from the beginning to my family and friends I kept it from everyone else in those early years. Fear. Fear of rejection over a virus.

As time went on I started my own retail business. Now I had another reason to keep quiet about my secret bug. Customers. Customers needed to make a living.
I also kept it a secret with almost every employee for years not knowing how they would react and not knowing that the word would spread.

Eventually as the vice of stigma released it's grip over time due to more knowledge and less fear I crept out of my comfort zone and became much more open with my employees, some trusted customers, neighbors, and acquaintances.

During the past 10 years or so I never hesitated mentioning my status if I felt the need to do so.

This was just my experience with stigma and how I dealt with it over a 30+ year time span. It changed, evolved.

So much information has been put out there about AIDS and HIV since but stigma remains. I honestly doubt it will ever disappear until this virus is eradicated but knowledge is power.

I know I'm repeating what others have said but fear is the enemy and opening up when realistically possible will not only educate the ignorant but will open up a sense of greater freedom within yourself.

Edited to add:

My story was pretty boring in comparison to many others in regards to stigma but it is what it is and had a profound impact on my life for too long. It IS getting better but even a titch of stigma is too much and still stings.







 

[Jeff G]

I was not an Aids activist, just a young guy who was sure I was going to die within a year or two . I was at work one day and one of my biggest clients told me people were saying some pretty bad things about my personal life and then she asked me did I have Aids .

I told the truth because it was the right thing for me to do and I was tired of keeping my secret . I was aware of what was going to happen to me, I was going to get sick one day and people would find out and I would lose my business and my home before I died .
This was what I had seen happen to other people and it would be no different for me .

All the bad stuff happened to me but for the dying . I was not going to go to my grave ashamed of HIV and thought the last thing I can do that can have any meaning for me at this point was to talk to anyone who would listen and tell them what I knew about what was happening to me and others in my situation .

I do know that in my own small way I made a difference in raising awareness for at least some people and I took comfort in that for a long time .

[aaware72]

In my opinion you are splitting hair here.  HIV/AIDS have the same related stigmas. 

The sad thing is these stigma related to HIV is one of leading reasons that the young are not getting tested and this is driving the on going increase in infection rates of this group.

“Despite having the highest incidence of new HIV infections, youth aged 18 to 24 have a low uptake of HIV testing. . . The large difference in serostatus knowledge between youth (60% undiagnosed) and older adults (20% undiagnosed) highlights different risk perceptions and access to HIV testing,” the researchers note. “With ongoing viral replication and higher HIV burdens than treated persons, they are more likely to contribute to ongoing HIV transmission events if they have unprotected sex.”

While some groups provide ongoing LGBT- and adolescent-friendly services, “major barriers to linkage and retention in care exist, which include stigma, consent, payment, housing instability or homelessness, transportation, and mental health/substance use.” As a result of such factors, only about 30% of HIV-diagnosed youth are linked to care and retained for one year.” The “exaggerated disparities” in the continuum of HIV care in youth relative to adults “may explain the high prevalence and increasing incidence of new HIV infections in this age group.” The researchers conclude, “This cascade highlights that current efforts for treating already-infected adolescents and young adults remain a challenge. Most interventions to address the cascade have been developed for adults. These are not particularly generalizable to youth struggling with identity formation, economic hardships, and unstable housing. Youth-focused interventions are necessary to improve the HIV cascade for adolescents and young adults.” (AIDS Action Committee, 2014)

http://www.aac.org/.../archive/update-march-2014.html...

I post a thread out Othering  We need to stop this with in our own community! 

 Rule, P. & John, V. (2008) explains there when it comes to the social pathology of HIV/AIDS the notion of othering has a particular relevance.  Studies have shown that those infected or otherwise affected by the diseases that there is evidence that there is a stigma associated with HIV/AIDS and it manifest itself through radial othering.  What this causes is silence, secrecy, denial, and distancing oneself to avoid the stigmatization of HIV/AIDS.  This led to an undermining of solidarity within the LGBT community and creates the boundary within the community of us and them or those that are HIV negative or positive.  HIV/AIDS has seen the effect of othering since early history and that was demonstrated by the name that was first given to this disease; Gay-related Immune Deficiency (GRID) This soon was changed when testing became possible and the new form of othering was that HIV positive people could be separated from the larger group in society.  Those that choose to test within the LGBT community, being gay and bisexual men risk themselves to being othered.  This group that is stigmatized happens at many levels and those infected themselves become internally oppressed through violence, isolation, discriminatory practice, and labeling.  This has become to be known as HIVism; “a pervasive system of discrimination and exclusion of the oppressed people who are living with HIV/AIDS”.  Othering is a strategy of identifying, differentiating, subordination, and discriminating against the HIV infected or affected other is the basis of HIVism.  (p. 80-84)


Rule, P. and John, V. (2008) Unbinding the other in the context of HIV/AIDS and education. Retrieved on April 7, 2014, from, http://joe.ukzn.ac.za/Libraries/No_43_Mar_2008/Unbinding_the_other_in_the_context_of_HIV_AIDS_and_education.sflb.ashx