The Invisible Survivors: Long-Term AIDS Crisis Veterans

[CheckCar]

I saw this post making its rounds on social media and wanted to share it here.

To anyone reading this who falls into this category, I thank you.  🙏

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The Invisible Survivors: Long-Term AIDS Crisis Veterans

When we talk about the AIDS crisis today, we often frame it in past tense - a tragedy that happened, a war that was fought and, thanks to modern medicine, largely won. But for long-term survivors who lived through the darkest years of the epidemic, the war never really ended. They're still living on the battlefield, surrounded by ghosts, carrying wounds that most of us cannot see.

   The Lost Generation That Didn't Die

These are people who came of age in the late 1970s and early 1980s, who watched as a mysterious illness began claiming their friends, lovers, and neighbors. They saw the first obituaries in 1981 and 1982. They attended funeral after funeral throughout the 1980s and 1990s. They held hands as people they loved wasted away, often rejected by their own families, sometimes dying alone in hospital corridors because healthcare workers were too afraid to touch them.

Many of these survivors were diagnosed HIV-positive in an era when it was a death sentence. They were told they had months, maybe a year or two if they were lucky. They quit jobs, burned through savings, said their goodbyes, and prepared to die. They helped others die with dignity. They became experts in hospice care, funeral arrangements, and managing unbearable grief.

And then, miraculously, they didn't die.

   The Cruel Gift of Survival

The development of effective antiretroviral therapy in the mid-1990s, and later the Affordable Care Act's guarantee of coverage, gave long-term survivors something they never expected: a future. But it came at a devastating cost.

While their peers were building careers, buying homes, saving for retirement, and creating stable lives, these survivors were in survival mode. They have gaps in their work history that span years or even decades. They lack the professional networks, the retirement accounts, the home equity that people their age typically rely on. At 50, 60, or 70 years old, they're starting from scratch economically - if they can start at all.

Many are essentially unemployable. HR departments may not explicitly discriminate, but they notice the gaps in résumés. They see the subtle physical markers of long-term HIV infection and treatment. They calculate the cost of adding someone to the health insurance pool. Despite possessing extraordinary skills - crisis management, emotional resilience, caregiving expertise, the ability to function under unimaginable pressure - these survivors find doors closed.

   The Psychological Toll

Beyond the economic devastation lies something even more insidious: profound psychological trauma.

Imagine living for 10, 15, 20 years believing each fever might be your last, each moment of fatigue a sign that your body was finally giving up. Imagine watching everyone you loved die, often horribly, and knowing you would be next. That kind of sustained terror doesn't just disappear when the medications start working.

Long-term survivors suffer from PTSD, complex PTSD, depression, and anxiety at rates comparable to combat veterans. They have survivor's guilt. They have what some researchers call "traumatic grief" - mourning not just individual losses but the wholesale destruction of their entire social world. Some lost 50, 100, or more friends. Entire circles of support simply vanished.

Many never told their families what they were going through. They isolated themselves, hoping they would die quickly enough not to become a burden. They made plans for suicide as a backup, just in case their deaths weren't swift. They developed what one survivor described as "a panic which was the natural byproduct of the reign of terror this disease has been."

   The Community's Blind Spot

Perhaps most painful is the indifference they now face from the very community they belong to.

The LGBTQ+ community has, thankfully, moved forward. Younger generations grow up with PrEP, with marriage equality, with the ability to live openly in ways previous generations couldn't imagine. The nightmare is over for them.

But it's not over for long-term survivors. They remain trapped in that nightmare, living reminders of a past the community wants to forget. As one survivor put it: "There's no glamour, nothing sexy, and certainly little, if any, fun in this so our issues seem to be squarely placed in the middle of a blind spot."

HIV service organizations focus their resources on prevention and helping newly diagnosed people manage their health. These are crucial services, but they leave long-term survivors without support for their specific needs: economic rehabilitation, mental health treatment for AIDS-related trauma, job placement programs, and community recognition.

Long-term survivors gave everything during the crisis. They cared for the dying. They fought for research funding and compassionate treatment. They kept the community together when it was being decimated. They survived when survival seemed impossible.

Now they need help catching up to the lives they couldn't live while they were busy helping others die and preparing to die themselves.

   What They Need

Long-term AIDS survivors aren't asking for pity. They're not asking to be forever dependent on public assistance. They're asking for:

- Economic support programs tailored to their unique situation - job training, placement assistance, and help building the financial security their peers had decades to create

- Mental health services specifically designed for AIDS trauma, provided by professionals who understand the unique nature of surviving a genocide that targeted your community

- Recognition from HIV organizations and the LGBTQ+ community that the war isn't over for everyone, and that those who fought longest deserve ongoing support

- A chance to remake their lives into something meaningful, to honor the friends they lost by finally being able to live fully themselves

   Why This Matters to All of Us

The story of long-term AIDS survivors isn't just LGBTQ+ history. It's human history. It's a story about what happens when society abandons its most vulnerable people, and about the extraordinary resilience of those who survive anyway.

These survivors have skills our world desperately needs. They know how to show up in a crisis. They know how to care for people without judgment. They know how to maintain hope in hopeless situations. They know how to build community when everything is falling apart.

We owe them more than we can ever repay. But we can start by seeing them, hearing them, and creating the support systems they need to finally, after decades of mere survival, truly live.

The AIDS crisis isn't over. It's just evolved. And its longest-serving veterans deserve better than to be forgotten in the blind spot of our collective memory.

-If you are a long-term survivor reading this, please know: Your life matters. What you endured matters. What you lost matters. And what you still have to give matters. You deserve support, recognition, and the chance to build the life you couldn't build when you were too busy surviving.
Edward Kimble

[+ Lucky]

Great article on a topic too long ignored. I hope it helps.

 

Edited October 22 by Lucky

[+ Charlie]

I am old enough to have lived through the early AIDS crisis and watched friends die before the disease even had a name. I was active in a gay rights organization in the 1980s, and took over running the AIDS Information Hotline in a major city when the woman who started it couldn't handle it any longer because she found it too upsetting. After the "crisis" was over, I had friends who had survived but were still dealing with the illness; my best friend since high school died in 1996, and the cause of death was listed as cancer, but those who knew him well were aware that he had been diagnosed with AIDS in the 1980s, and when asked, his sister, a medical technician, still says, "He died of AIDS." A close friend's lover died of AIDS in 1987, and for the rest of his long life he was always questioning whenever he developed physical problems: "Is it really from  AIDS that's dormant in me?" And, of course, for many of us there is always "survivor's guilt"--"I was as sexually slutty as he was; why didn't I get it?" AIDS has turned into another preventable or controllable disease, but one that unfortunately is still associated in everyone's mind with gay sex, so unlike most diseases, in the minds of many people it still carries overtones of punishment for something one shouldn't have done. I am glad that the focus nowadays is shifting more towards controlling the disease than blaming those who have contracted it.

[+ purplekow]

As a physician who worked at St Vincent's in Greenwich Village from 1976 until 1979 and who opened in 1982, in a nearby suburb of NYC, an office which offered free service to HIV patients, mostly from Manhattan, who had nowhere else to go, the toll was devastating on everyone who was involved. I worked  in that office until 1988.  In 1988, a powerful physician in the area had a son who contracted HIV related to his hemophilia and that led the hospital to add an HIV clinic.    Up until I retired one year ago, I was still diagnosing new cases of HIV and still having difficulty finding appropriate care for newly diagnosed.   The long tern survivors are a great resource for the newly diagnosed and in many cases, they know the ins and outs of the HIV medical care system better than the people running it.  All one has to do to realize that HIV is not a thing of the past or a chronic disease that can always be managed is to go to the intake area of a local HIV facility.  One look at Scruff or Tinder and the number pf profiles that list undetectable as a status is remarkable and it is also a warning to those of us who remain negative.  Prep is only effective if you take it without fail.  Those of us who are negative need to take care to stay that way.  We need to disabuse the concept that becoming positive and then just taking the medication is a reasonable option.  Yes, I have seen newly diagnosed patients who were "bug chasers".   

Social support, emotional support and financial support is needed for all those dealing with this scurge.  Just because it does not make the headlines very often if at all these days, does not mean the problem has disappeared.  

Edited October 22 by purplekow

[+ sniper]

A facebook friend who's HIV positive and tends to struggle with stable employment seems to be posting at least once a year how he's rationing his pills while he waits for his health insurance to start next month. I googled the med he was talking about(Biktarvy) and it retails for $4,000 a month.

At this point, shouldn't at least some generics be available? I'm sure the latest are better somehow, but it seems like there should be better options than skipping doses.

[+ purplekow]

Not taking Biktarvy is a dangerous solution as even missing a few doses may decrease effectiveness and allow for mutation which may lead it to being ineffective against his strain of the virus.  I understand that there are financial constraints but he should discuss with his physician the better alternative whether that be not taking any medication or taking a different less expensive choice.  Please suggest that he not handle this delicate balance of medication without guidance from his physician. At the very least, have him google is it dangerous to miss a Biktarvy dose and he will get quite a bit information regarding why it is potentially dangerous.  

Edited October 22 by purplekow

[jeezifonly]

Like many, I was reluctant to test thru the 80's, when nothing could be done - just always assumed I was, and practiced "safe sex"  

Then I met The One. We tested together, his negative. I've been poz for 40+yrs. Perhaps genetic resistance, perhaps luck, but the timing of testing and hit'n'miss treatments available thru clinical trials, got me thru til I was eventually prescribed a protease cocktail that has worked for years. I have never had worrying labs, nor any infections, nor wasting. The fukkin' lucky club. Had I not met my fella when I did, I probably would have been less motivated to act like I had a long life ahead. Still, all thru early treatment, I worked a job requiring forecasting budgets 1-2 yrs in advance, and the cloud over my head was "will I even be here then?"  

Now I know: I was, I am, and truly appreciate the post acknowledging all the others in my generation who struggled with meds, infections, work, finances, family, and love, and did not get to see the pleasurable part of growing old. 

[CheckCar]

@Charlie, @purplekow, @jeezifonly This thread made me realize that there’s no ❤️ reaction option on CoM threads. My blue thumbs ups are really ❤️