AIDS -now and then

I am 54 years old and lived in West Hollywood from 1989 - 2003.....the experience of seeing so many die has left a permanent mark on my soul....not really depressed but it changed the way I think about life and I bet anyone else who was there for that time has a similar feeling....

PTSD and Survivor Guilt.

I have them, too.

Why wouldn't they have any idea? There's still no cure for AIDS, and approx. 50k Americans seroconvert every year.

I think now instead of marches and ACT-UP demonstrations, it's just a discreet relationship between a patient, a doctor and a Pharmacist.

I lived in Dupont Circle from 1981-1999. Many of my friends died, including two of my best friends, men I spoke with every day. The second one and I probably would have been a couple if he hadn't had AIDS. I'm not sure. I still think of him, in particular, every day. And there were two others from before I lived in DC. It has affected me long term. I haven't fallen in love since sometime in the '90s. I'm old now. I don't think about finding someone any longer. My time with that is over.

And yes to survivor guilt and PTSD. I did everything you needed to do, enthusiastically and often. But I have never been positive. I must have that gene that keeps HIV at bay.

I'm a straight girl, born in 1985, to a single mom who had a very close circle of gay friends who were very involved in my life from my birth. I knew them as Uncle Mike, Uncle John, Uncle Dennis... I knew the AIDS epidemic in a strange way - I watched men I loved and adored disintegrate so suddenly and in such secrecy, and we were all so scared. I will forever equate my 7th birthday with being the same week my mom told me Uncle Mike was dying of AIDS. He passed away two months later. Obviously so much has changed since then - the awareness, the stigma, the treatment - and it's no longer a death sentence - but it's still very much reality for millions of people. I'm shocked none of my friends have had any similar experiences I've had with that era - and trying to talk about what it was like, especially with gay friends of mine, they almost want to avoid any discussion of that time and pretend it never happened. Like, remembering that time of my childhood makes me feel like an anomaly sometimes - and that kind of "whatever-that-life-then-is-not-my-life-now" mentality scares me too. There's so much that happened that should never be forgotten. And just because you didn't live through it directly, doesn't mean it isn't worthy of being understood or remembered or respected... it was very real for millions of people, those living with and dying from, and the millions of people in their lives who loved them immensely. I don't know. It's something that really upsets me, time to time, and I saw this post and felt like ok, I'm maybe not alone in this...

♥♥♥♥♥♥ to the eldergays

To all my friends on shore....in my life, I loved you more.

I was 23 when the AIDS virus was first being mentioned in 1981. I am shocked and disappointed how many of my younger ( late 20;s and 30's) friends are HIV +. In the earlier days we did not know how the disease was spread. (Anyone remember when many people only drank beer out of a bottle because we were afraid to drink from barware in the Gay bars?) We did not know about the use of condoms to prevent the spread of AIDS. We have known this now for 25 years. I feel like all the time volunteering at fundraisers was a complete waste of time, efforts, and money when I see these young people becoming HIV + DECADES after when knew about safer sex.

AIDS fatigue is real. Wrap that rascal!

I am a 52 year old NYC gay guy here since my teens and still HIV-negative. I have intense survivor's guilt sometimes, and after losing pretty much all of my closest gay friends, have mild PTSD symptoms. While in perfect health, I suffer with depression and anxiety. I don't feel I can separate this from living through the AIDS die-off, and those 15+ years of doubt not knowing if I would live, or die horribly as my friends did.

I'm certainly grateful, but it sucks. I have an almost impossible time creating real bonds with other men beyond casual friendships.

I think OP and some others might find this both comforting and heartbreaking.

Aftermath by Siegfried Sassoon

[quote]Jeremy Irons reads Siegfried Sassoon's classic anti-war poem, which was written in 1919 to express his horror of the first world war, in which he served: "Have you forgotten yet?... Look up, and swear by the slain of the war that you'll never forget!

At some point it was very common for a gay man to be invited / go to several funerals of former friends and fuck buddies (who died AIDS related deaths) during the week. I have to wonder if that changed with social media? Do "friends" still go to funerals or do they just send their thoughts and prayers via social media even though they'd have the means to go to the funeral? I mean is there some sort of cynical "Who dies of AIDS these days?" attitude that minimizes HIV/AIDS?

R10 drama queendom. Why this: "I don't feel I can separate this from living through the AIDS die-off, and those 15+ years of doubt not knowing if I would live, or die horribly as my friends did."

My friends and lovers were dying. I got tested every 6 months. Stayed negative through the whole shit show. Never had "15+ years of doubt not knowing if I would live, or die horribly as my friends did." because - I KNEW I WAS NEGATIVE.

Still it was awful to live through and survive. I agree. But it was worse to die like they did.

I remember people saying that only bottoms got AIDS.

Such bull. How did the first bottom get AIDS? Who were the tops passing on HIV to all these bottoms? There was a lot of stupidity around and there still is.

[quote]Such bull. How did the first bottom get AIDS? Who were the tops passing on HIV to all these bottoms?

Versatiles, probably.

Fear overtook common sense for quite a while. Later on people got really angry, because they saw so many friends suffer and die for so many different reasons and they looked to pharmaceutical companies and the government for help and support and both shunned them for quite a while.

how did pharma shun? drugs aren't developed overnight. it's a freakin virus. It was 1982, 1983. How many viral treatment were around? soon as pharma realised they were looking at a cash cow the drugs started coming. we hate them for their profiteering, not for dropping the ball.

They had AZT sitting around since 1964 and yet it took them forever to apply it to the new disease.

That's not correct, R17. The pharmaceutical companies approached AIDS with NO urgency at all. Too few people sick with it. No one wanted to believe it would spread as it did. It was interesting, but it was not viewed as a big money maker. Especially not with the amount of research that would be required. In 1985, four years into the epidemic, the AIDS budget in the city of San Francisco was bigger than the US Federal AIDS budget. And in 1986, fucking Ronald Reagan tried to reduce it. We had to fight for every bit of attention that was placed on AIDS.

The entire process of how drugs are developed and tested and brought to market was changed by the relentless pressure on Big Pharma and the government by ACT UP. Our friends were dying and they did nothing.

I agree the government dropped the ball. what I said about pharma fits what you just wrote. as soon as they realised the cash cow, pharma delivered. AND RIPPED everyone off and let people in poor nations die. But they developed the drugs. yes government dropped the ball.

pharma was only too happy to sell whatever they had. the government was the snag in getting that crap out to people with aids. not pharma.

pharma wasn't the only stakeholder doing the research, either. national institutes of health in USA and europe and the major universities as well.

Im not an apologist for pharma. For example they just held the better truvada for years to continue milking the first for profits until the patent runs out. I was there for 80's crunch I don't think I hated pharma and didn't they they were the principal evil concerning the slow upstart. It was governments and society's general hatred and queasiness about a killer STI for dirty haitians, poor africans, and dirty immoral slutty gays.

I am 58. In 1984, I was a hospice chaplain intern in Austin. I feel like death entered my life early.

I feel like even if it was known how the disease spread, most would've still engaged in risky sex. They still do.

I suffer PTSD from having to care for a dying uncle when I was in middle school. It was 1995. He lived in our in law unit. My parents put a hospital bed in my bedroom and moved my brothers and I into my sister's room. 4 of us shared a bedroom for a year. He literally withered and died before our eyes. All of his friends whom we grew up with did as well. I'm not sure why they hadn't began treatment by that time because I have to assume they were infected for years. They ALL died within that same year. I'll never know.

It made me confused about my own sexuality and weighed down with guilt over having sexual desires of any kind. It was a very difficult thing to process at at that age. I am now 32, but I am always, always thinking about HIV.

"as soon as they realised the cash cow, pharma delivered"

Soon? The epidemic started in 1981. It took four years for AZT to be offered. Then DDI. Then DDC. By that time, it was 1990. The protease inhibitors were six years after that.

Pharma and the FDA have an incestuous relationship. And both of them were content to enroll sick people in double blind placebo trials, denying half of them any treatment at all. Or people were denied entry to one trial because they had previously been in another. Too bad, so sad. They cared more about their data than about our lives. And they were arrogantly unwilling to rethink anything to speed it up. Only after they were hammered again and again did things change. They did not move quickly to help people with AIDS. They moved methodically to develop something they could patent. Free market capitalism did not magically clear the way.

I went to a memorial service today for my across-the-hall neighbor, who died from cancer on Thursday. She was such a nice lady, I'm very sad as I write this. As others have mentioned, I too suffer from PTSD after watching so many friends and lovers die between the late '70s and sometime in the '90s. It's been around 20 years since I went to another memorial service, but today's service brought it all back.

I'm happy for younger gays who aren't burdened with this baggage of memory.

special shout-out to your parents R25 for doing what they could for your dying uncle.

There should be resources to help those who lived through these years and now have PTSD and survivor's guilt. It would at least make for a very interesting (and useful) PhD in clinical psychology.

When I was a kid, every time anyone in the family died, my great grandmother would lament that all the people she knew were dying. From the early 80s until the mid 90s, I lost all but a handful of friends from our glory days. I know how she felt.

I've just read Paul Monette's AIDS memoir, Borrowed Time, a blow by blow account of nursing his lover through two years of AIDS - four bouts of PCP, blindness from the herpes megalovirus and ultimately death from meningitis. It is such a moving and powerful account, made more so in the knowledge that Monette himself died of AIDS seven years later. I recommend it to anyone who wants to understand something of the true horror of the early days of AIDS.

AIDS then:

Gay porn producers and performers dutifully and responsibly using condoms and avoiding oral contact with semen.

AIDS now.

Mainstream porn providers like Sean Cody et al. routinely presenting bareback scenes including group sex and gang bangs that feature lots of cum eating and swapping and guys nonchalantly cumming in each others' asses with closeups of lots of sperm dripping out of assholes. Even porn media promotes and celebrates it.

History has a pesky habit of repeating itself...this won't end well.

Did anyone else hear RSJ's story of caring for is uncle with AIDS?

It only needs a slight mutation and all these men on Prep could be struck down with an untreatable strain of HIV which would escalate quickly to AIDS. Men who died in the 80s and early 90s would be horrified to see the millinnials blithely prioritising cum in the bum over every other health concern.

Repulveda is a major con artist and I doubt he did much - too busy on his dog sex site.

R35 He said on the show that he helped his uncle a lot. You can't lie on TV. Right?

Who is RSJ?

Robert Sepulveda Jnr, the career escort from the series Finding Prince Charming.

He picked Eric, the only HIV + contestant, as his final choice, which would never have happened in the 20th century.

Eric is a poster boy for being HIV + in the 21st century.

Ten years on HAART and he still looks as if he's in his 20s. He has his own business and is a beautiful, successful, kind and sensitive guy. Twenty years ago he wouldn't have lived to see his 30th birthday.

I applaud my elder gays who lived during this epidemic and managed to survive. Thank you.

r14, and that's why I think the government injected the gay community with aids. For the most part its true, only bottoms can get it.

You can respect them by using a condom and not barebacking with sero-randoms.

My question is this... if you somone gets hiv/aids and doesn't take their meds... why don't they end up real skinny with brown spots like the old days?

Is the actual disease any different?

r43, what makes you think they don't. Any anecdotal info?

Well I've not seen anyone who looks sick with aids and I'm assuming a lot don't know their poz and don't take meds.

Is my question confusing? It's a serious question.

R43, if they don't take their meds they will eventually end up with an opportunistic infection like pneumonia or retinal herpes, which can cause permanent blindness in a matter of hours. Kaposi's Sarcoma wasn't the first sign of AIDS in everyone, it's just the dramatic sign people remember. Most would much rather have the treatable KS than the dreaded retinal herpes.

You're not going to see people suffering from those conditions because as soon as they appear, the person will be hospitalised and the condition treated as well as it can be. If they didn't know they were HIV + before, they find out. KS, retinal herpes and PCP can all be treated and then the retrovirals stop AIDS in its tracks and people revert to full health.

I didn't know any poz people personally because I lived in my Podunk hometown til 1988. But the pall and sadness permeated our consciousness. Celebrities seemed like friends, and one by one they got sick and/or disappeared.

It all seemed so unfair and appalling. Why didn't we have a President who took charge and went ballistic at this like the plague it was? When I hear Reagan's name my blood pressure goes up.

People who don't have regular sexual health tests can still break through with AIDS, but it's so much easier to bring under control these days. It's still not cured, though. People have to take the meds for life. Even when the tests come back 'undetectable viral load', it just means the virus has retreated and is hiding in some reserve deep in the body. Scary.

When I was a kid I had a cousin who died of AIDS and to this day he's barely ever mentioned by anyone in the family, it's almost like he never existed.

[quote]—millennial gay who gets it, even if he'll never fully 'get' it

you're a doll, keep on being who you are

Are you chastising me r13, or agreeing with me? I'm terribly sorry I have feelings other than those you might allow me to have. It's awful your powers do not permeate all of us, I condole you. I never said I was unaware of my status, but that seems to give you great superiority over me, so please hold onto it....tightly.

I cared for my partner from 1987 until his death in 1990.

It was tough but you get on with life. I never had time for the PTSD stuff... to much to do.

Life is filled with tragedy. If it's not one thing thing it's another.

*If it's not one thing, it's another.

I'm 61 and I spent years during what should have been the prime of my life worrying when I would get ill. Friends and lovers died along the way. I missed a lot, and I miss those guys but somehow I remained negative. Still bitter about the plague we have had to endure, though.

Apart from the hurt and trauma as friends died, coming of age in that time and witnessing how the heterosexual majority behaved has left me with an abiding mistrust of people and an awareness of their ability to very quickly turn on their fellows. Watching the rise yet again of intolerant religion, xenophobia and the increased divisions within society so recently, along with the obvious breakdown of the political machine, I fear that, having won some freedoms, we are on the brink of a return to very dark times. I was honoured to witness at that time extraordinary bravery and dignity in people who were essentially outcasts and I simply hope that that will win through again because, on the face of it, the world seems a much more self absorbed, cynical and brutal place now when push comes to shove. I am in my late 50s now, have a happy relationship, good health, a great life and many friends ( most of whom are straight ironically ) and I am thankful every day for being so blessed. But I still believe it can turn on a dime and am concerned that those young gay men who have grown up with freedoms so long fought for don't realise they can be robbed of them far faster than they were gained. Love and respect to my fellow old buggers who lived through it then. We really must live our lives for all those who never had the chance.

It was an awful time to come out. I was in the military 1985 and right after Rock Hudson was diagnosed The DOD made all of us get tested. Those who did test positive were treated like pariahs. A good friend of mine tested positive and his command was so awful to him. They packed his stuff for him wearing white anti-contagion suits and he was escorted off of his ship!!! No one knew anything about the disease then. He never told anyone he was gay, but it was assumed. He was sent to Balboa Naval Hospital and was stationed there until he died from lymphoma two years later.

Thank you, eldergays for sharing your stories. If we don't tell our history, no one else will. And, of course, the history goes beyond NY and SF. I hope those of you who lived through the AIDS crisis will continue to share your stories - especially those of you who didn't live in NY or SF. I fear that the experience of those you in smaller cities and towns will be forgotten. When I lived in LA I volunteered with LGBT seniors (60+), most of whom were in one way or another directly impacted by the AIDS epidemic. It seemed like every experience was a double-edged sword.

Those LGBT seniors who lived in big cities like NY, SF and LA said they often had the love and support of the LGBT community - that they saw a community formed as a result of the crisis. But on the flip side of that experience, with a higher concentration of out (or semi-out) gay men in the large cities, they were more likely to experience the loss of a higher number of friends, acquaintances and community members.

Those who lived through the AIDS crisis in smaller cities perhaps didn't know as many people who died in the 80s and 90s, but living in more conservative areas, they didn't have the sense of community that their bigger city counterparts experienced. They experienced the AIDS crisis more quietly and privately and, I imagine, in some cases more abstractly.

Anyway, I shouldn't paraphrase and speak for others. Just wanted to let you know we appreciate you sharing your stories. We're listening.

Lordy there more than a dollop of grief porn, sentimentality and fuzzy narrative in this thread. With a squirt of obsequious youth. I'm with R53.

I agree that life is about dealing with tragedy, that if it's not one thing it will be another. My partner at the time died of cancer and I nursed him until he did. But I still believe many underestimate how quickly the heterosexual majority will turn on gays if given the opportunity.

R60 Ok i agree with that.

Not to be Debbie Downer, but positive people on HAART do not 'revert to full health' as stated above. The drugs themselves are toxic. The virus is still in there. Someone in his 20's who sero-converts can expect some great years. But from 50 and on, he can also expect some serious trouble. Early onset dementia can begin in the 50's. Loss of bone density. Hip replacements begin in the 50's. All sorts of other illnesses. With more drugs and more surgeries to address the illnesses. All of it is not something that most HIV negative people should expect until they are far beyond their 50's.

AIDS is new in our lifetimes. Each day we are one more day into this. Don't believe the pharmaceutical companies who would have you believe that with their antiviral, you'll be walkin' on sunshine.

sign. R62. generalities based on old science, summed up in an article from 2009.

Yes, the article is from 2009, but it is accessibly written. And the problems remain.

We have no idea of the long term prognosis for young people, diagnosed early, and on the current and future generations of HIV treatment. That article is about a different generation than the one you are trying to warn. Its fine to warn them, but don't apply the wrong research.

Its not good medicine or science to tell 20 year olds that ART is "toxic". There are very few doctors who would use that term about the current molecules and treatment. Its a heritage term. There are plenty of reasons to remain HIV-. We don't need garbage semantics.

[quote]generalities based on old science, summed up in an article from 2009.

Well, this is from a band-spanking-new article, "French study reveals the growing complexity of medical needs as people with HIV age."

By the time people living with HIV reach middle age, a high proportion already have complex medical problems requiring multidisciplinary management. The study found that just over half were at high risk for serious kidney disease, 46% were at high or very high risk of a cardiovascular event in the next five years and 56% had hypertension.

The proportion of patients with an undetectable viral load increased from 51% in 2004 to 91% in 2014. However, there was a significant increase in the proportion of patients diagnosed with age-related co-morbidities and taking therapy for these ailments.

[quote]that's why I think the government injected the gay community with aids. For the most part its true, only bottoms can get it.

And your theory for why the government only wanted to kill bottoms?

R67, the people reaching middle age and experiencing problems are those whose health was affected by the ineffectual AIDS treatments of the 80s and early 90s, particularly the highly toxic AZT. Many of these men were also weakened by having to fight recurring opportunistic infections, such as pneumonia and CMV. They were already battered before the anti-retrovirals came on the scene in 1996.

It's very different for someone who became HIV + in, say, 2006 and has never seen a deterioration in their health. There is no evidence that their middle or old age will be affected by long term use of anti-retrovirals. We won't know for another 15 years and, by then, medications to prevent or help with this will probably be available.

why bother, r69. Drama queens such as R67 are more attached to their fear-mongering than trying got help people do whatever to stay negative, or to quickly discover if they are positive and go on treatments (that are not "toxic") that are available in 2016.

r68, oh fkin dear. Reread the thread and comprehend the argument. There had to be a first cause.

The wise Louis Farrakhan explained it all years ago.

‏@ABC7

25 years after Magic Johnson's AIDS announcement, advances in medicine have made disease manageable

I'm SO happy that the poz guy, Eric, won Finding Prince Charming. :)

ALL THE BOTTOMS CAUGHT AIDS FROM A TOP AT SOME POINT!

Why are gay men so dense?

Well with the over/misuse of PrEP now is going to end up looking a lot like then.

Yep and if some dreadful SUPER-AIDS looms up in the near future, Trump won't be the one allocating the funds needed to research a cure, will he?

Good luck to the gays that voted for Trump getting their AIDS meds or their PrEP once he and Pence take office.

Trump will make Prep illegal.

When my Uncle became ill with AIDS related symptoms in the early '90's, he was dropped off at an emergency room by a "friend". He had nobody that looked in on him. Finally they called my father in Ohio and me and my boyfriend drove up their to see what was going on. He looked pitiful in that hospital bed and absolutely sobbed; he was sick, afraid and abandoned. He'd left his small town in Ohio in the late 1940's and ended up in New York City after some years. He always seemed so glamourous -- taking trips to Egypt and Europe, always full of stories and dressed to the nines when he came to visit. He began calling and complaining about "bedbugs", before he became really sick, so we weren't really suprised. I might add that whenever he called our house my father (his only sibling), automatically handed the phone to my mother -- my father hated the fact that he was gay and wanted nothing to do with him.

This same man that *hated* my uncle because of his lifestyle, at the age of 70 and not in the best health himself, got on a plane, closed up his brothers apartment, collected him and took him back to that small town in Ohio. And drove there 6 days a week (a half hour drive from the city he lived in), made sure he got his medicine, got him to his doctor appointments, got him social services, CLEANED UP AFTER HIM, did his laundry and made sure he was okay. He did this until he died about a year later. Often he was the only one that would visit -- relatives that live a few doors down the street wouldn't come near him. And all those buddies he had in NYC? Never even called. Or sent a card, or communicated in anyway. When the shit hit the fan, it was his elderly, fragile, homophobic brother that took care of him. My uncle died in 1993. I have never been as proud of my father as during that time. The AIDS years were like that -- you had people that were supposed to be around that disappeared, and then you had people that would shock you by being there when things got really bad.

touching contribution, thanks for that.

White people problems, white people traumas.....

When Trump and Pence cut insurance coverage for PrEP and AIDS meds it's going to look a lot more like the 80's pretty soon.

PREP is a luxury for idiots and shouldn't be covered on insurance.

R84 thinks sex should equal death. What kind of idiot are you? Don't tell me I can guess. You would cut off oxygen for emphysema and bariatric surgery for fatties too.

How about instead of depriving people of medical care, you start thinking about reducing the inflated salaries and fraudulent prices charged by hospitals, medical equipment companies, pharmaceutical companies, doctors, dentists, et al.

Medicines cost far more than they should.

In the UK, when supermarkets started being allowed to make their own generic versions of a medication, a med called Zantac for heartburn was found to have a retail value of 80p for 12, as sold by Super Savers. The brand name Zantac was £12.90 for 12.

R86 is correct. There have been millions of dollars stolen by medical practitioners and nursing homes billing the govt. for dead and non existent people using real and bogus social security numbers up to three or four times for the same ghost patient. Doctors, chiropractors and nursing home operators are vile and corrupt.

For people living with HIV and those that advocate alongside them, a Trump White House coupled with a Republican-controlled Congress is nothing less than a waking nightmare.

Among the ACA provisions sure to be on the chopping block are Medicaid expansion. Medicaid is currently responsible for 30% of all federal funding for HIV/AIDS care in the United States and, while removal of Medicaid expansion wouldn't do away with all of that funding, it would greatly diminish it and make Medicaid more difficult for people living with HIV to obtain. For people living with HIV, the cessation of Medicaid expansion may well mean a return to the days of having to prove to the government that the virus has progressed to such a point that it qualifies you as objectively ill enough to receive Medicaid, a process that stands in direct opposition to all of the scientific and public health guidance we have mandating that people seek out HIV care as soon as they know their status.

But, ultimately, all of the issues listed above are technical ones that in many ways pale in the face of the larger threat that Trump poses to people living with HIV and the broader demographics to which they belong. We are entering a golden age of ignorance and harassment in America right now, and there are few populations that will serve as more inviting targets for such abuse than people living with HIV.

Wear a condom!