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The Lost Men: Gay Men Who Survived the Plague and AIDS Survivor Syndrome

Imagine being in the prime of your life and living a fun and newly liberated existence and then in a matter of years having that stolen from you as you watch your friends die one by one constantly  wondering if you will be next. Living through that pain, fear and heartache day in and day out for over a decade. Now fast forward 25 years later.  Despite surviving the living hell on earth that you endured there are very few who understand or even comprehend what you feel except for a small majority of fellow survivors.  You are constantly haunted by those black days and the ghosts and memories of those you loved and  lost.  You are filled with a guilt of having survived while all those around you were snatched from this world.

This is AIDS Survivor Syndrome.

AIDS Survivor Syndrome describes the spectrum of sustained trauma survivorship. It is psychological state resulting from living through HIV/AIDS pandemic affecting those who made it through the plague unscathed and those who became HIV-positive in the 1980s and 1990s, when having HIV was considered a terminal diagnosis.

AIDS Survivor Syndrome is not PTSD (Post Traumatic Stress Disorder).  It is a “syndemic” of psycho-social health issues that exists on a spectrum. It varies by degrees of intensity, and it affects those who survived the worst decades of HIV.  The sustained accumulation of trauma from living through the early decades of the disease distinguishes AIDS Survivor Syndrome from the more commonly known Post-Traumatic Stress Disorder (PTSD), in which trauma typically involves a single event or events of limited duration. PTSD is misdiagnosis or a partial diagnosis at best.

What signs and symptoms define AIDS Survivor Syndrome?

· Depression
· Lack of Future Orientation
· Panic from Unexpected Older Age
· Suicidality
· Sexual risk-taking
· Self-destructive Behavior
· Substance Abuse
· Social Withdrawal & Isolation
· Persistent Negative Thoughts like Deep Regret and overwhelming Shame
· Survivor’s Guilt
· Cognitive Impairment Such as Poor Concentration and Loss of Immediate memory
· Loss of Ability to Enjoy Life or Anhedonia
· Deep Sadness
· Emotional Numbness
· Anxiety & Nervousness
· Irritability or Flashes of Anger
· Difficulty Falling Asleep or Staying Asleep
· Nightmares
· Personality Changes
· Feeling Tense, “On Guard” or Hypervigilance.
· Low Self-Esteem & Self-Worth
· Sense of Hopelessness
· Irritability
· Self-Stigma

Many older gay men who came though the plague years unscathed suffer from severe survivor guilt and anger which  is common among survivors of natural disasters, combat, and epidemics. It refers to the feeling that many survivors have that they have done something wrong in surviving when others did not.. This is something that a community as a whole needs to be aware and understand because only with support and understanding can this condition be treated.  The demonization of the older LGBT community by the younger community also adds extra weight to the depression and other issues that long term AIDS Survivor Syndrome sufferers experience.

There are few published studies looking into AIDS Survivor Syndrome. However, in recent years, LTS themselves have begun to come together and share about their lives in the aftermath of the epidemic’s darkest years. The evidence that a particular condition has been affecting them is too overwhelming to ignore. Unfortunately, few published studies means few health care providers or therapists are aware of the signs that an individual is experiencing. So we as a community must be aware of this condition and lend support to those suffering this syndrome, like myself.

I have seen my darkest days.  Friends dying one by one.  And to this day I wonder why I was spared when others were not. And there are many more gay men out there like myself who although we survived those black years we will always be haunted by them and have to live with the memories until the day we die and see our friends once again.

RESOURCES 

Sage
Let’s Kick ASS
The Reunion Project ACRIA
Graying of AIDS
Long‐Term Survivor Group on The Well Project

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Will Kohler

Will Kohler is one of America's best known LGBT historians, He is also a a accredited journalist and the owner of Back2Stonewall.com. A longtime gay activist Will fought on the front lines of the AIDS epidemic with ACT-UP and continues fighting today for LGBT acceptance and full equality. Will’s work has been referenced on such notable media venues as BBC News, CNN, MSNBC, The Washington Post, The Daily Wall Street Journal, Hollywood Reporter, and Raw Story. Back2Stonewall has been recently added to the Library of Congress' LGBTQ+ Studies Web Archive. Mr. Kohler is available for comment, interviews and lectures on LGBT History. Contact: Will@Back2Stonewall.com

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94 thoughts on “The Lost Men: Gay Men Who Survived the Plague and AIDS Survivor Syndrome”

    1. Will, the information here is compelling. I may have missed this, but can you direct me to the research on this topic? I have not seen anything published on this topic since circa 2000. If anyone is aware of something more recent, in the scholarly literature, please let me know. If there isn’t, then it may be time for a formal study on this topic.

  1. Im one of those “survivors” and the symptoms listed almost entirely affect the human race in one form or another. I have spent my life healing some of the things you noted not because Im a AIDS victim but because it was my responsibility to get healing for myself and release the traumas of the past. I think the main issue is now that the people are growing older there is another set of issues arising and very few people are talking about it. I agree the syndrome you mentioned has affected so many that a lot are not able to be good advocates for them selves..

    1. Next week I will be 57 years of age and never anticipated reaching the age of thirty. My earliest childhood memories are of elementary school film projector guides on surviving nuclear war – “duck and cover.” The strongest memories I have of my early teenage years are of my grandmother’s constant dread that my uncle would be drafted and sent to Vietnam. By the age of thirteen I was convinced I too would die in that war. Fast forward to the early 1980’s. The still young conservative Christian college honor student realizes he is Gay. Nothing that has ever mattered matters anymore. His world is forever altered. “Free at last!” Think so? No! Now his friends start getting sick and dying “The Gay Plague” begins, but he is one of the “lucky” ones. Why? He ran back into his closet, turned off all the lights, slammed and locked the closet door, and stayed there for twenty years. Do not feel sorry for me. I am and will be fine, but do not ever presume that you can comprehend what I went through or what goers on inside my mind.

  2. the article hits the nail on the head for most of us that lived through those early years. I was 23 in NYC in 1983 and the survivor guilt is real. I have moved past almost all of this now that I am approaching 60 but a lot of the feelings still exist. I experienced maybe half of the things on the list mentioned. Cant even begin to describe what it felt like to daily look through the OBIT page in the paper to see if someone you havent seen in several weeks has passed. One of the worst things were the “hidden obits” as we called them. After a “long” or “short” illness, etc. families were so brutal back then – kicking out sick partners that were also dying. it was truly disgusting seeing friends thrown to the street like garbage and the courts honoring the familys wishes instead of the partner of 20 years or more. I still wonder to this day how i came through that unscathed when everyone around me were dropping like flies.

    1. This article is dead on. I can live with the past and the health issues from having aids before meds. But being treated like I’m less than the rest and being lonely makes life so hard. I just moved to a gay neighborhood in cmh and to months later I’m still snubbed by most of my neighbors. They don’t do that to each other. Sometimes I wonder if they knew how they made me feel would they even care. Columbus is notorious for mean gay people and I’m not the only person treated like this , but it doesn’t make it feel any less painful.

      1. get out of the gay neighborhoods and you dont get that attitude, The rest of columbus isnt like that – just german village and vic village for the most part.

  3. Will I’ve not heard this term before ASS. It fully encapsulates what I went through and continue to live daily. Thankfully I’ve developed my own methods to deal with my demons. Cheers and thanks

    1. Poz 35+ years and living life for all it’s worth. Hang in there. I like to think I’m living for the more than 200 that I lost….people I planned to grow old with and swill liquor! Get involved….don’t let the bastards get you down, especially in the age of the fool with the tiny hands in the White House….they don’t win!

    2. Same here. I continually question why me. Sometimes depressed, other times have to go and live life. It is tough sometimes, though.

      1. Oh, folks, get over it. Survival guilt? You must not be making many friends if you’re continually looking at the past. I lost over 70 friends and acquaintances to AIDS, but I could either mope about it and feel sorry for myself or I could move on. I moved on. I have newer friends and a good life.

        1. “Get over it”. Gosh – why didn’t WE think of that? All of those suicidal depressions, hundreds of hours of therapy and wild mood swings could have been averted, if some kindly soul had only slapped me on the forehead and said “Get OVER it, girlfriend!” /s

        2. Telling people to “get over it” isn’t helpful David. Some of us do have a sense of guilt over the fact that we have outlived everyone we expected to grow old with and live out our lives together. Maybe you were not blessed to have so many friends to lose. Others of us were. We watched them die while we lived and still live. What we feel is normal among anyone who survives when others did not. I presume you have little experience with grief? Otherwise you would choose your words more wisely. And know that I am choosing my words wisely to keep from saying what I really think of your attitude….and we will just leave it at that.

        3. David Kaye – 70 friends?? How many “husbands”, partners and CLOSE friends did you bury? By sheer luck, you never got AIDS; you are NOT a Long-Term Survivor! This isn’t about YOU. All you can do is disrespect those of us who have lived with HIV for 30 years or longer, & our loved ones and “family”? You’re just another self-loathing homophobe persecuting LGBTQ people and the HIV community. So “MOVE ON”, we don’t need your hateful attitude in our community.

        4. That’s offensive and tin-eared. “Just get over it”. I do not know if you are simply heartless or just igorant. “Just get over it does not help with depression, anxiety, or eating disorders. YOU might have “newer friends and a good life” honestly you are damn lucky. Have little bit of emapthy for people who are not as lucky. I just hope none of your new friends ever need you for support. Tell them “just get over it” and watch them run away from you.

    3. Turned 59 this year; POZ 35 years now.

      I’d like to hear about your perspectives and share mine with you – any chance you might be interested in becoming pen pals?

  4. Thank you so much. I am a survivor. I am going to bring this article to my therapist. I have shared this with all my social media sites. Maybe there is or could be a Facebook group.

  5. I lived and played at Ground Zero (San Francisco). I went to all the baths and sex clubs. 70+ friends and acquaintances died, my entire social network. I didn’t because I could see that people were abusing themselves by inhaling poppers. I knew that inhaling petrochemicals could cause pneumonia, so I stayed away from that and wouldn’t do anything with anyone who did. I also learned that to avoid STDs, after fucking or getting sucked you should wash your cock with soapy water and piss afterward to clean out the urethra. Through my careful activities I have never caught anything, not HIV, nor any STDs. I mention all this because I was THERE, and yet I feel no guilt for surviving because nearly everyone I knew who died was careless sexually or did LOTS of drugs or both. Sure, I was depressed about losing my entire social circle, but early on I realized that I could either mope around and make myself miserable, or I could move on and get on with my life.

    1. So, clearly, you think that those who died have no one to blame but themselves. How convenient and how self-serving. I find little difference between you and the likes of the Baptists who demonstrated at the funerals of gay people who died.
      YOU, girlfriend, were LUCKY not particularly safe. I had friends who took the same precautions you did, and still they died.
      So in your self-congratulations and in “moving on,” what have you done? Gotten a few more blowjobs? Do you have anything to show for life except a few notches in your gun? You are the kind of gay men who disgust me and a lot of others, too, I suspect. What a waste of your time on earth!

      1. I am NOT anybody’s “girlfriend”. I find that gay men use female terms as a put-down because they use them when dishing someone else. That to my is misogynist, and I won’t accept it. As to my comments about taking responsibility for my life, as I said, I lived and played at Ground Zero, San Francisco, during the height of the AIDS epidemic. I saw people play very recklessly, and I stand by my assertion that I survive today without HIV or any STDs because I’ve always been careful who I interacted with and what I did.

        1. Seamus and for David’s support, I became infected in May 1982 and am still alive and kicking. (as I noted above) I have had one “unsafe” encounter since 1985 and it was a moot point because I was already infected. We didn’t really know what was out there when I got infected. Your self righteous comments are out of line. It’s the same junk I heard at one of the “classy” bars when someone stated that they didn’t need to worry because “those” people did not frequent that bar. I couldn’t tell them so, but I was looking at at least 5 men who did frequent that bar who were infected. Given the opportunity, I would engage in a sexual relationship and it would be “safe” despite the fact that my viral load has been undetectable for years.

          Yes I have had a very full and productive life and plan to continue to do so. I had a 36.5 year career in public service that ended with retirement in 2008. I continue to work part time. I have had a parallel 35 year career in non-profit board leadership and management, most of them LGBTQ+ or HIV related. I am not tooting my own horn, I’m just doing what I was taught by my faith community was the right thing to do. It is how I was raised by my late parents as well.

          So Seamus, get off your high horse and stop judging….be productive….it might make you smile in spite of yourself. Your internalized homophobia seems to be showing.

          1. Bruce: I wasn’t the one criticizing anyone EXCEPT David for his unfortunate, “slut-shaming” attitude about people who contracted AIDS – he seemed to be saying that people who got AIDS did so because they were not as safe as he.

            I later stated that he (and I and many others) were lucky in those early years.

            I’m not judging anyone except those who blame the victims. I am certainly not on a high-horse.

            As for being productive, I was an attorney who spent many of his years in practice advancing the civil rights of LGBT people, primarily in New Jersey. I didn’t make much money at it, but derived a great deal of satisfaction as one of those who helped bring about legal marriage rights for same-sex couples. I am especially proud of the work that I did to advance the parenting rights of same-sex couples in that state.

            Internalized homophobia? I’ve spent enough time on the front lines to know I’ve been an out and proud gay man for over 50 years.

            I realize you confused my anger with David’s comments with his comments about people with AIDS. I suggest you go back and read the thread. The gist of my comments is that those of us who made it though this Holocaust alive are, for the most part, lucky. Lucky that we didn’t get infected or, if we did, lucky that we survived long enough to see some medical progress.

            We have enough to worry about these days with the current administration without resorting to infighting or victim blaming. You might want to read Signoreli’s recent book “It’s Not Over” to get an idea of what fights may be still to come.

            Seamus

            p.s. There’s nothing wrong with tooting your own horn. I’ve had far more people wanting me to toot something else. And thank you for “doing the right thing.”

      2. Do I have anything to show for life? YES. (1) I am co-founder of the 2nd-longest running GBLT community center/counseling center in the USA, the Pacific Center in Berkeley. I was their first media rep, and got lots of attention for the group via radio, TV, and press interviews and activities. Also, (2) I founded Gay Geeks, an intellectual discussion group that operated for 8 years. (3) I am also founder of SF Games, a twice-weekly board and card games group now starting its 23rd year. (4) I also produce live weekly jazz shows at the Atlas Cafe in San Francisco, and have been instrumental in helping new musicians get gigs. (5) I developed a suicide counseling template specifically for GBLT folks, which has been used for decades by Suicide Prevention of Alameda County.

        You see, my whole life has been devoted to creating community, by bringing people together socially in various forms. I don’t bitch and moan, I DO things.

        1. >You see, my whole life has been
          >devoted to creating community,
          >by bringing people together socially
          >in various forms.

          —-

          I agree, brother. You and I found a way to take our grief, rage and Survivot’s Guilt and turn it into an energy source. Instead of being a fragmentation-bomb of unfocused rage, I became a laser-beam of effectiveness.

          As a young gay man, I grew up in a household full of women (and a father who hated me for my whole life). As soon as I got away, I found the Leather/kink/Fetish community. I was surrounded with love, mentoring and amazing support. I was in the company of wonderful men who stood shoulder to shoulder so that I could stand on THEIR shoulders.

          Then, they all died. Out of around forty men who formed a Leather Family, I am the only survivor. I have held dozens of men in my arms to say “It’s time to let go now”, when nobody else would touch them.

          Since then, I have hosted over 3,000 social events, and have never taken a single penny for my work. Why social events? Because I have believed that what our grieving Tribe needed more than anything else was “occasions for joy”.

          Even when it was not comfortable for others to hear, I have insisted that there is a huge wound in our Ttribe’s heart, that may not ever fully heal until all of us are long gone. In the meantime we can get together, hug, laugh, drop all the shields, and be present with each other as brothers.

          Perhaps you have heard of “Leather Pride”, held in many cities around the world? I invented it.

          Back then, everyone was furious with Gay Leathermen. We had the temerity to march in Pride Parades while wearing assless chaps, following each other on leashes, whatever, and refusing to be ashamed. We were as bad and unfashionable as the drag queens. How rude!

          Also, we attacked each other, in our wild, unresolved grief. The few survivors were completely without our elders, mentors, leaders and role-models. They were among the very first to die.

          So I came up with a concept of celebrating our artists, artisans, leaders, volunteers, affinity-groups and businesses. I had the theory that it would help us to pull together in common purpose, as an annual event to look forward to.

          Then, other cities showed interest in doing the same, so I spent years traveling on my own dime. I gave speeches, spoke inspirationally, and did the heavy lifting behind the scenes to make sure that each city succeeded in creating an annual event that would attract people from all over, to join in the celebrations.

          I have around 140,000 photos on my computer to document my history as a community leader. This page contains a small fraction, just from the last seven years:

          http://fetishmensandiego.blogspot.com/2014/11/photo-archives.html

          I am now too old to host big events. They wear me out. So, I still am still living every day as a contribution in our community. I now mentor younger men who are eager to learn how to live proudly and effectively, as gay leathermen in a world that is often very hostile to us.

          1. Amen, Papa Tony. That’s why I remain glad for all the Pride parades and celebratory events. You are right, sometimes we just need to be reminded that it is good to be alive and good to be gay.

      3. David Kaye – Of course you avoided HIV and other STIs. Gurl, you can’t get them from your right hand and looking at porn in your parent’s basement.

    2. I share similar experiences, but with a different conclusion. I stopped counting at 140 men in my life who died. I was deep in the kink/leather/fetish scene, going to big, weekend-long fuck/fist/flog parties nearly every weekend. For decades, I clung to my belief that the only reason why I made it through unscathed was because I nearly overdosed as a younger man, and stopped all use of drugs when I hit the party circuit. Now, I know that it was just the luck of the draw. When someone is living through a nightmare, it is easy to cling to beliefs that don’t always make logical sense. Let’s not compare experiences, or start a race to the bottom of victimhood. Every one of us has valid experiences, and at least WE here are talking about it, which may not be comfortable, but at least we are on a path toward better mental health. Too many tens of thousands of our brothers haven’t yet been able to face up to their pasts. Many never will, because the pain is too ever-present.

      1. I agree. It was the luck of the draw. I didn’t do drugs but I wasn’t particularly careful, either. We are all lucky to have survived and I am glad for all of us who lived to tell the stories.

        In my life, I’ve worked a great deal with survivors of the Nazi holocaust. The effect on them was similar, but even more so, as they live with the loss of parents, brothers, sisters and other family members in the camps. For many, they don’t even have a place to mourn because the Nazis burned their victims.

        AIDS survivors live with the similar survivor’s guilt (“why did I survive and others did not.”)

        What living through all this did for me is to make me resolve not to allow others to destroy my life and my community by fighting back against discrimination and marginalization. As a survivor, it’s the least I can do.

    3. My late husband was a Good Catholic Boy who never touched poppers, drugs, or even abused alcohol. We were both “safety boys” who always used condoms and repeatedly told others that they should do the same. Your telling me that he died because of his own recklessness is a slap in the face to all those who died or lost others to the disease.

      1. My request of everyone is that we show mercy with each other. We are all bearing scars, and it can make us jumpy and peculiar. Our generation is bearing a deep wound from our holocaust, and even admitting that can be frightening, and can make us wary.

        1. I generally would agree with you, but when someone starts blaming those who were infected (a form of slut-shaming) I am reminded of many of the gay Republicans I knew when I lived (and loved) in Washington, DC. These people could be found most nights in the backrooms getting fucked or fucking and most days in the White House and in Congress (there were more than a few in the Reagan administration) helping to pass policies that did nothing to help the community they were fucking. They do not deserve to die (as some did) but they need to be called out wherever they are found.

          We recently watched the HBO production of “Angels in America,” which brought back a lot of memories and, perhaps, added to the anger I feel towards people like the above commenter.

          1. It should not surprise me that, in every forum devoted to a specific group of people, someone else has to step in and say their piece, in a way that minimizes or negates the experiences of those for whom the forum was started.

            To you who are fortunate enough to have not contracted the virus – regardless of how you have handled your circumstances – good for you. Consider yourself lucky/favored/blessed/charmed, continue to do your good work, but have enough compassion to at least not involve yourself in a discussion by those who are coming to terms with something that you are not.

            If you were coming from a place of compassion in the first place, you’d realize that this very type of “I’m so glad I’m healthy and here is all of the good work that I am doing” statement is often heard as ‘holier than thou’ and only adds to the shame and guilt of the survivors. Replace ‘holy’ with ‘lucky’ and allow those who still grieve to heal, without the preaching. Most of us have heard our share of sermons already. It’s not helpful.

            Now, let’s get back to the healing.

          2. >To you who are fortunate enough to have not contracted the virus –
            >regardless of how you have handled your circumstances –
            >good for you. Consider yourself lucky/favored/blessed/charmed,
            >continue to do your good work, but have enough compassion
            >to at least not involve yourself in a discussion by those who
            >are coming to terms with something that you are not.

            Territorial, much?

            Peeing all over the discussion, to exclude the “other”, brother?

            Cutting off allies, just because you have been resentful for decades?

            Your anger does not belong to me, so you can keep it.

            MY AIDS-related PTSD is fully valid, deep and lifelong, and this discussion is not a race to the bottom of victimhood. Try to keep that in mind. This is about our shared experience together as brothers in loss and grief, NOT “I’m the only valid one hurting here”. Try to keep that in mind, and keep your issues off of folks who don’t own them.

    4. Well, pat yourself on the back for being such a great little Boy Scout for doing all the right things as you were getting it in both ends in those days and SURELY, those who were not performing your good housekeeping skills DESERVED to die in the very worst possible way, right? Your virtue signaling is nauseating. I’d even bet you’re a Republican.

    5. If you NEVER had AIDS, and you never had to bury any “husbands”; this article is not about YOU! You’re not a Long-Term Survivor like the rest of us. Take your callous and disrespectful “opinions” some where else, please.

      1. Not sure why this popped into my inbox after over two years, but it did. It puzzles me why some have such animosity to those of us who are long term survivors. It will be 38 years for me in May. I wonder if your animosity is from the fact that we did survive. When I stopped counting, I had lost over 200 friends to AIDS. Essentially everyone I had planned to grow old with had died. I have outlived several families of friends. When we got infected, we really did not know what was out there. We didn’t know the source. We could only guess.

        Once the source of the syndrome was identified and ways of prevention became available, many of us began protecting ourselves from exposure. Then when drugs began to increase our survival rate, we took them. Now we have PreP for those who are HIV negative to use (with condoms) to prevent infection. Quite frankly, at this point in time, there really are few excuses for getting infected. Unfortunately, the reasons are cumulative in effect: illiteracy, ignorance, stigma, racism, homophobia, poverty. In the southeastern US we find the perfect crucible for all of these to blend to create infection rates that still rival sub-Saharan Africa.

        Had this disease been treated as a health crisis/issue from the beginning, it would never have reached the proportions that it did. Yet from the beginning, it was a political rather than a health issue. The first name GRID standing for Gay Related Immune Deficiency was nothing but political. Illness should never be linked to a defined group of people. Ta Sachs is not “Jewish disease.” Sickle cell anemia was never called “Negro related blood disorder.” Yet there were no qualms about creating a stigma for gay men. And we continue to suffer the consequences of that politicization.

        If you are infected, hang tough, take your meds and take care of yourself. If you are not infected, stay that way and don’t be an asshole about it. Count your blessings and don’t let your arrogance get you infected. And stop being critical of those who are infected. It isn’t your prerogative. Nor are you any more “holy” than anyone else for being negative. Show some compassion toward others….you may need it shown toward you someday.

        1. Bruce Garner – This article popped up on Twitter today. Did you read ALL the comments? My reply was directed at David Kaye, no one else. A pompous, self-righteous idiot who never had HIV, and is telling all us Long-Term Survivors to just “Get Over It” if they suffer from survivor’s guilt. I’ve lived with AIDS for over 35 yrs, I worked in HIV clinics for many years and have been a vocal activist and educator for the rights of Seniors with HIV. I lost 2 “husbands” and countless family members to the epidemic. I don’t need some numb-nuts queen who NEVER experienced HIV telling me to get-over-it! You speak of “arrogance”; but it’s really righteous-indignation toward self-loathing homophobes like David Kaye.

          1. I did read the comments, realizing I had read them before. My comment today was also directed at the same type of person as yours. I have as little use for that attitude as you do. I had hoped to add more to the discussion and maybe educate some who are internally homophobic as well.

            It still seems a little odd that something popped up again almost 3 years later. Maybe it’s just my ignorance about how social media works. Or maybe it’s indicative that nothing ever really goes away!!!

          2. Bruce Garner – I don’t know who brought this discussion to Twitter today. There are some points made that are still helpful. I’m glad to know we’re on the same track, seeking to erase ignorance, stigma, and isolation for survivors of this major health crisis.

    6. Get over it? Perhaps you should get over being a self-righteous, egomaniacal pompous ass with all the empathy of a Trump supporter? Just asking.

    1. Well as one of those people who buried many friends and also dealt with burying all my siblings and both parents. Having pulled the plugs on 3 of them. Cared for mother with Alzheimer’s and raised brothers kids. I was able to get through the time by putting life on other paths caring for others. Now I have no one left to care for as kids were educated and put through college and now have the emptiness syndrome as well. I am not suicidal and do not do illegal drugs or drink. But do feel like I have been cursed and know that I have done good for all the right reasons. But the feelings of guilt are awful. The guilt of why am I last one standing.

  6. I had a lot of those symptoms and still do at times, however I decided to drop the drugs, alcohol and cigarettes some 16 years ago and with the help of a 12 step program was able to somewhat put those days behind me..not forget, but not regret surviving either. I truly miss my friends and the fun times that we had. I just wish that there was someone who could teach/show me how to be happy and gay and sexually fulfilled
    at 67.

  7. Talk about whistling past a graveyard! It was a weirdly terrifying time, yet it was still exciting as a young 22 year old in 1984. I remember going to gay clubs in the mid-80s and getting the sense that the “party” was over.

    Most of my guilt – and I hate to admit it – was about being completely paranoid about AIDS (before we knew what HIV was). I pretty much ran the other way from anyone I knew who was affected. I was too scared to get close to them. It was like infection by association.
    I would donate time doing home meal service for PWAs but could only do the food prep and often times wondered if the food might be “contaminated” even though I knew it was irrational .I offered massage therapy a few times to clients with HIV, but still freaked out about pimples and scars being contagious. I remember when mosquitos were rumored to be contagious. My love life consisted of hand-jobs and the Princeton rub. No kissing because you didn’t know if deep kissing was safe. It definitely screwed up my relationship with sex.

    I envy younger people who grew up after retroviral therapy came along. But at the same time, I get really defensive when called out for being “sex negative”. They have a point, but I feel like the Japanese soldier in the forest who doesn’t believe the war is over…

  8. I was a teenager at ground zero Newark, NJ were CDC embarked on a humanitarian mission to find the cause, the rest for me has been the darkest of history, thank you for sharing Will.

  9. god, deja vu…diagnosed in 1992, t count is very low but steady…i had to read my friend’s name when the aids quilt was in town…i got it from him, he had no idea, died of menengitis in 2 days…his family would not allow any of his gay friends attend his funeral, the were ashamed of him…heartless…i line with ASS every day.

  10. I was into my 3ard year of nursing I was a very young gay kid working at Seaton medical center in Austin tx. When aids hit. It was one of the most difficult times in my life. I could not believe that god would allow something like this to happen my patients would come in one day and were dead 1 or 2 weeks later ,It was very hard to see most family’s would have nothing to do with them, The sad thing was I became immune to the feeling and pain that came with death. I would go home and cry almost every night because I would become friends with these men and they were alone, I could never understand why some people gave up on them. I also gave up on love, I saw how it destroyed them. How could someone love them and then abandon them so easily. Life is very hard and very cruel at times, but I guess that has made me the person I am today

  11. We need you men. We need people who were there to tell the story. We need your memory and we are joyful that you survived to stand as witnesses, as well as remain friends, family, lovers, and caregivers to the rest of us.

    1. They just started to drop in the street literally. I was way young, but sexualy active. The men were beautiful, sexual, smart, handsome and free. We were dying every minute. We tried everything. Someone was dying in my hands every day. We did fundraisers, so many of us were too sick to work, homeless, could not find healthcare here in the midwest. We were beat up by the cops and their friends. Every day we were in a war we were losing. The shells dropping around us blowing up. A physical war as bad as any battlefield. SO many of you are my heros. You bucked the system, gave all you had and then some more. You gave dignity. Sometimes that is all you have. At night I can still hear them sometimes. I will walk down streets that was once full of these man gods (not disrespecting women and others who died) and all I see is an empty street. Guilt. Why did I survive? I lay awake sometimes and wonder why? My true love slipped away from us in my arms. It never got better. Just alone. I was supposed to die by now. Why did I survive? To kick ass and to remind the ones who killed the ones I love, I have not forgot. You will burn in the pit of hell if I have to drag you there. Oh and we all know who you are. Pieces of shit. I will not forgive or forget. I am 50 this year, clean and getting crankier every day. Stronger every day. I have not forgot. Nor should any of you. I will burden alone. Just never let anyone forget and push to bring certain people to justice. I AM STILL ANGRY!

  12. In part, the Names project fulfills part of this remembrance task. However, there needs to be an effort similar to the Holocaust museums, that collect the memories of the living and the dead and provides a place to remember our history and mourn our losses.

    1. I wholeheartedly agree with this. I remember when they brought the original quilt to Boston. Then it was a few thousand panels. I know there are “NAMES PROJECT” chapters in a few cities. I think something like the USC Shoah Project has done for the holocaust testimonies. Would be a nice addition to that. Guys coming out now, doing Meth and unprotected sex do not realize the risks. Anti viral’s have erased the fear. Unfortunately those that forget the past are doomed to relive it.

  13. Thank you for showing me that there are still those out there that understand. I have a very hard time theese day hanging on somedays. All the years of the 80’s and 90’s have in many ways broken me.. it’s very comforting to see that there are others who really do “get it”

  14. This story encapsulates so much of my life. I was 23 in 1983 when the “gay plague” began to ravage your community in New York City. It is absolutely true that one of the formost thoughts I had during those years was wondering if I would make the age of 30 and see the year 2000. I did live to see the year 2000, but my entire circle of best friends, dozens of “friends”, and hundreds of acquaintances in the theater community of New York City perished. Well I did find myself left with years to live I was in shock. I realize that I had an opportunity that all of my friends hadn’t. And that opportunity was to make a difference in the world because I was giving the time to live a full life. I entered college as a freshman at the age of 41 and graduated with my BA in 2004. I continued until I had my MFA at the age of 48. I am now helping to educate a new generation of what I hope to be good and caring citizens in the world. I live with ghosts every single day. I attempt to honor them every single day. I’m so grateful for every single day. Nearly 57 years old and still alive, still living, still loving and appreciating life!!!

  15. Hi, Im a white 56 year old man who is a bottom. The reason I’m here and healthy is that I was very picky with the men I would have sex with. I started dating right when Rock Hudson died and soon after heard about using condoms. I only had sex with my boyfriends and always used condoms. To honor all of my friends who died I live every day and find Joy in the smallest of things. I think about those men and the great friendships we had and know that when someone dies the rest of us must go on living because it is a gift not to be squandered. Also, I’ve gone to therapy to work out my PTSD.

  16. Thank you Will, for your timely article. Best friend, age 57, took his own life last weekend, 20 years after his partner. Trying hard to understand, but your words certainly help.

  17. I just turned 60 – This is a very interesting topic, as I think back to the years where many men around me were dying, and the gay community begin to evolve in ways that were just amazing. Personally, I was minimally concerned about my own safety. I certainly took some sexual risk, any of which could have left me infected. I was aware that there were many men who did not give a shit if they were infected or who they infected and those are the men I tried to stay clear of. There was a consciousnesses and respect for my own body that I had prior to coming out at 25 and it stayed with me. Maybe that’s what saved me? I’m not sure.

  18. Tim Tutton I came out in 1984 at 17 and from the day I came out at my first gay bar in a small city in Ontario Canada HIV/AIDS had been the norm in my life. The first time I had sex without a condom was in 2010 with a boyfriend who I trusted immensely. People ask me why so long my replay is always the same “I can’t explain, you had to be there”. With every friend I had in the early to late eightys dead from opourtunistic infections like KS or PCP and the rest refusing to take the dreaded AZT “horse pills” three times a day and washing them down with 8-10 other pills one of which was always an antidepressant I have always felt “why me”. Now at 49 the guilt has hit its pinnacle. I suffer from everything on this list and in 6 days I am to be evicted from my home by the Sherif. I have a terrible addiction to a girl named Tina and have cut 98% of people out of my life. I have not looked for a place to live as I have felt that living on the street will be my way of penance for surviving and loosing all of
    the people who meant not just the world
    to me but EVERYTHING. My griefs is so overwhelming that I am beyond loathing but where I should be at Rock bottom. I only hope now we as a community take the past and learn. Our next step is to educate lime in the 80’s but it is to educate to KNOW YOUR STATUS. If you are negative you are not infecting anyone, if you are positive, on meds and are undetectable you are not
    Infecting anyone. But (I have always learned there is a but) if you do not know your status and are running around with a viral load of 100 000 and a CD4 count of 100 “you will be sick” barebacking everyone, you are infecting the masses and we will never get rid of this plague. So please stress to everyone the importance of getting tested please and good luck to you all brothers and sisters.

  19. I came out in 1978, but had been sexually active for at least 10 years (I was a rather precocious teenager.) Many people were infected prior to there being any recognition of the AIDS virus being in our community. We were in the throes of sexual liberation. I remember telling my Mom that I didn’t have to worry about getting some one pregnant or getting pregnant myself (trust me, this was an interesting conversation with my parents who were getting used to having a gay son.)

    We didn’t take precautions because we thought that any STD we caught could be cured with an antibiotic. Fortunately, the only thing I ever got was a bad case of crabs. We didn’t know what was already in the community. HIV/AIDS wasn’t OUR norm.

    Some people were lucky. Others were not.

    The first friend I lost to AIDS (in 1980) thought he contracted pneumonia from breathing cleaning products at work (he was a janitor.) Sadly, he infected his partner, who had recently left his wife and come out. Both died in a matter of months.

    So if you made it through all this and are still with us, consider yourself extremely lucky. Lucky you didn’t have sex with someone who was infected. Lucky you lived long enough that there were treatments, however bad they were. Lucky you lived long enough to learn the routes of transmission and could avoid these. Lucky you haven’t succumbed to the other dangers in our community, such as drugs, alcohol or suicidal despair.

    And remember you are still around for a reason — to be a resource to others by remembering. This is something we went through together and which brought about the most profound social changes in our lives. We learned the value of caring for each other. We brought about our liberation. We fought this, but that fight is not over nor, probably, will it ever be.

    I think we’ve seen, today, with Trump’s latest tweet, how easy it would be to reverse the gains we’ve made. Don’t get complacent. Remember how quickly Germany went from the relative gay freedom during the Weimar years to the Night of the Long Knives (when Hitler purged gays) and the pink triangles and murders in the camps during the Holocaust.

    Stay strong, stay healthy and, just, stay.

  20. I am also a long term survivor of living with HIV. I’ve been infected since May 1982….over half my life. Yes I’ve felt some survivor guilt and I’ve felt many of the symptoms described above. And yes, by God, I am angry. But my anger is not at having survived. My anger is at the failure of the medical community, the government agencies and everyone involved to treat HIV as a medical issue from its beginning. Instead they allowed it to become a political issue. Even the original name GRID, standing for Gay Related Immune Deficiency, was a slap in our faces. Never had medical science ever saddled an entire group of people with a name identifying them with a disease. Would they have considered calling sickle cell anemia “Negro related blood disease?” Or would they have called Taysachs “Jewish hereditary condition?” Hell no on either account, yet they had no problem with such discriminatory against us.

    We continue to endure this today. How much attention is really devoted to dealing with HIV? Program funds get cut. Racism rears its ugly head allowing so many to ignore the most numerous of those now suffering; young gay Black men. Racism, homophobia, ignorance and poverty provide the perfect crucible to infection in the southeastern United States.

    I’m not going anywhere. I refuse to give in to HIV. I’m a proud, healthy, 68 year old fag who plans to keep being a pain in someone’s ass about HIV for the rest of my life.

    And for my younger colleagues who have issues using condoms: grow up! Act like a man. Take your PreP AND use a rubber. Hep C is also deadly. If you are not imaginative enough to enjoy a condom, you are a sad case. Learn how erotic they can be and make the most of it. You know it could save your life?!

  21. As a heterosexual Black man living with HIV 30+ years I connect with everything from this article… Clearly the listed signs and symptoms that define AIDS Survivor Syndrome is also prevalent among all other genders and identities. Resources that focus on addressing the mental health of individuals living with HIV should be as prioritized as much as resources that address physical health, substance use, as well as HIV treatment.

  22. I’m 62 and have lived in Provincetown since 1981. I’m a survivor I guess. The80‘s is my decade of death. People were dying every week here, sometimes ten guys in one week. I’ve experienced some symptoms on the list. I smoke a lot of weed and that helps me. I certainly understand Passover better.

  23. wow I have felt so much of this . thank you for the article. It hit my heart in both good and bad ways and knowing I am still here and living.

  24. See your friends once again? … Hmmm
    That’s something to work on as part of this recovery. Is the delusion of an afterlife part of this syndrome?

  25. I just saw this article. And I think it’s important to realize this is not everyone’s experience. During the last years of the plague (when my friends were dying), I was also working in war zones where I saw death on a massive scale. It gave me a perspective on death that I’m grateful to have acquired. I don’t fear it. I don’t feel guilt over it. I guess I figure that, if there’s an afterlife, it’s full of folks telling us to move on. I feel for our brothers and sisters who carry this burden. I know it is real. I’m not talking right and wrong, I’m just here to share a possible alternative. I’m not saying I don’t think about the hundreds I knew who died. I just figure they would want us all to live full lives.

    1. I think it boils down to something as simple as “Why not me?” In my case I went to the same parties,clubs, had the same adventures. In Boston, The Loft, The Fens and the Dunes in Provincetown. were popular”Hot Spots”. I would go there with friends or meet friends there. They all seemed to get infected. Not me however. So for me it is how did I dodge the bullet? Then I went through the waves. I had stored on address book away. Started another and in 10 years…stored away that one. I had worked in Nightclubs and bars and withdrew from that life. So it is not only about death and dieing,acceptance and moving on. It is more profound. It is insular isolation.

  26. Being Alive LA (Being Alive Los Angeles) has specialized in mental health services for the Long Term Survivors community since the early days of AIDS. The Dignity Mental Program trains mental health specialist with LGBT-affirmative training and extensive lived-experience HIV didactics. The clients of Being Alive also experience trauma, internalize homophobia among other presenting issues in addition to PTSD. Having therapeutic modalities beyond CBT and Psycho-dynamics allows clients to process their mental health wellness in a supportive environment that affirms their experiences. It is not enough to just have “off the shelf” mental health services for this unique population. The outcomes of this style of therapeutic mental health services prevents the cycle of clients/patients working through the revolving door of providers in the LGBT community. Clients are able to move forward in their lives, not live in shame, guilt or fear from being a survivor. We are not aware of any other HIV agency programmatically designing mental health services with this unique population in mind. We wish more agencies would. It is also extremely difficult to find funding for this unique program, so services are entirely dependent on budget availability until we as a community take this population and their needs seriously.

  27. Will, having lost one lover in 1984; my last in 1999; and hundreds of friends in all, only to discover that I was one of those “lucky” mutants with the CCR 5D(sic) genetic displacement that stopped HIV from attaching, it is perhaps even more intense. Especially now when genetic engineering techniques such as CRISPR seem to offer another treatment possibility?? I was tossed of so many HIV medical trials in the 1990s that it makes me wonder now. But the sheer loss of so many I knew and loved can’t ever be expressed in any way I can find today. About the only people I know who can even come close to understanding are some Vietnam veterans from small towns. And we are dying ourselves now, but until then I will testify!

  28. It breaks my heart to read this, as I am a 35 yr old Queer man, I do not have HIV/AIDs. I won’t ever know what it was like going through it. I wish I could show every one of you how much it means to me, and how much you all mean to me, whether I know you or not, because you’re still here. And for so many of the men and women who fought hard to end the epidemic, and deliver our community the way, it seems to me, you all did. Anyone in my generation is beyond lucky to be able to learn from the men and women about our community, and our lives before, during, and since then. It’s of paramount importance to me, and I for one am there with you, in love, and solidarity. To me, you’re NOT lost. You’re the Leaders. The Heroes. The Angels.

    1. Thank you for your kind and moving words. You may need fully understand how much these words may mean to so many survivors.

  29. I did not – and do not – have Survivor’s Syndrome. I miss my friends terribly, but – and this is not dig at anyone so don’t internalize – I didn’t do the things that would have caused me to seroconvert. I did worry about my friends, who were as unsafe as could be, and warned them many times that this would come back on them. I should point out that my ethnicity is Black, and so were my closest friends. Having survived the ’50s and ’60s, and being hunted and chased by racist groups, i just don’t have that issue. I do understand it, though.

  30. I’ve never thought of my relatively mild depression as ASS. (What a slightly fabulously appropriate acronym!) related, but… I do miss many people, sadly not all of whom do I remember their names or whose names come and go. My first friend to die (from pneumocystis) was in 1983; my ex of a seven year relationship died (of a host of ailments; he had stopped taking his meds) in 1991; my first boyfriend died in 1997. And so many others. I also have a couple of friends who have been living with HIV for decades; we rarely speak of it. I got clean and sober in 1987; “AIDS issues” were definitely part of my Step work which no doubt alleviated ASS… booze and drugs had numbed me to a lot of pain. Given my sexual proclivities, sober and not, I do not know how I’ve remained negative; I’ll be 72 in April.

    A night at the Ritch Street Baths in San Francisco in December 1974, on my last night a resident in my native city, resulted in a hospitalized case of systemic gonorrhea in Washington state. (The doctor asked if I ever practiced oral sex, but not if I’m gay.) I’ve never spent another night at a “tubs,” but I certainly have had many bar- or gaydar-initiated one (or two or three) night encounters and a couple affairs. Not nearly all of them were “safe” when we knew about that. We did always talk about it. Have I been incredibly lucky to have had honest bedmates or is it possible, I’ve mused, there is a subset of people whose immune systems somehow successfully fought the virus? I tested 2x/yr while sexually louche; I remember the great apprehension I had getting my first results. I’ve taken part in two HIV blood-based studies, my small way of fighting back, trying to help find a cure and vaccine.

  31. Being 66 years old, I lived through the darkest days. By sheer luck the plague passed me by. Volunteering with AIDS
    non-profits then and now along with friendships have helped me look forward with hope.

  32. I was diagnosed on April 28, 1983 and was given 6 months to live. Back still standing strong then it was called “the HTVL3 Virus”. Well here I am February 5, 2020, just 37 years later and still going strong, lived for many years without taking any medication until 2003 a full 20 years after finding out I had HIV/AIDS and now 18 years after the start of medication I am still here. Is there anyone who is a long term survivor like myself with 38 or more years of life after being told they had “the gay cancer” and not supposed live.
    Please contact me at:
    Email:
    markstack1962@gmail.com
    Call or text
    404-955-6754
    I’m looking to connect with others like myself who have been here since the beginning.

  33. Everyone has their own story about what they did to survive, not only physically, but emotionally. It was a horrible period in our history. But the fact that some of us are still alive, and how we live now, is the topic of this article isn’t it?
    Ultimately, however we lived our lives, it was the desire to feel good about ourselves, to be validated, or to be loved that influenced the choices that we made, and still does today.
    I refuse to live in the past because it is over, and I only have today and the future yet to live, but the past still affects my life. At this point, the primary remaining factor is lack of close companionship. I have been asked too many times, mostly be straight friends, why I am still single. “You are socially active and have a lot going for you”, they say. My answer is something like: You had 45% of the population from which to find a partner, I had around 5%, and so much of that 5% died a long time ago. Surely there is someone out there for me, but my search for a loving partner has been fruitless.
    Now as I live in my retirement years, I have no partner, family or children who might lend needed assistance. It is hardly a carefree existence. Ultimately, it points out that the lines that have been drawn to divide us are not helpful. Humanity is all one, and we all have our uniques stories and problems to deal with. There needs to be a lot more caring.

    1. I understand where you are coming from as I to have been there for many years. Finding friends, let alone a partner, is one of my most frustrating problems. It’s that feeling of having so much to give and no place to give it. I wish you well and hope that someday somehow you will fulfill you hopes and dreams.

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  35. Your article was spot on. I am one of those survivors. I was 34 yrs old when I was told that I was HIV positive. I was never a promiscuous person. I had had only 3 deep loves in my life. My last lover, who was the person who exposed me to HIV, got involved in drugs at the time, which I never realize how deeply. When I was diagnosed he refused to get tested and walked out within a few months. I was the one who was left to solely live with and attempt to understand what was going to happen in my life going forward. That was in 1985. I turn 70 this year. The inner guilt I have felt for over 35 years has been a constant reminder of why did I survive while many others that I knew died at a young age in case numbers. I have tried numerous HIV positive groups but found many much more depressing than I felt I could deal with. I wanted to learn how to successfully and positively live with being HIV positive, not how to prepare myself for possibly dying. I was abandoned by my family and many of my friends at the time. It made me fearful of ever discussing my HIV statue with anyone. It was always that constant fear of rejection over and over again that took me from the outgoing, friendly, caring and loving human being that I always was and turned me into a introverted somewhat reclusive person that I have somewhat become. Yes I have a few friends that have stood by my side since the beginning, thank God or I would have never survived at all. But as I grow older, and many of those old friends are now gone, I constantly find my inner willingness to continue to fight on diminishes as the years progress. I have seldom be able to talk to anyone about my feelings that I feel would truly understand or want to take the time to understand. I have never been able to truly express my inner most feelings and fears. I fell I have a lot to say but no one to say it to. I feel and know I survived for some unknown reason but still don’t truly understand why. I wish I was confident enough to tell my story but have never found a place, a forum or a person to tell my story to, which I think might be beneficial to there. I wish I had that place or that person. It might make me feel that my life did indeed have a purpose. This is the first time I have ever seen a site like yours and it has done my heart good to see that I am not the only one who has and does feel this way. I thank you for that. I am not only an HIV survivor but I am also a Stonewall survivor. I feel I have a lot to say but sadly no one seems to want to hear.

    1. That has been my experience as well. Most people (other than my closest friends — and only a few of which are survivors like us) and I don’t blame them for not wanting to hear about it. When my few remaining peers complain that young queer men don’t understand what we went through, I can only respond that I hope they never do! No one should have to go through what we did. Our generation’s job is simply to bear witness to the horror we lived through so that the lives of those we lost are remembered.

      My first break through in psychoanalysis was: I didn’t die. It was so easy to forget that one is still alive after being inundated by death for more than a decade. Yet we go on, an example of human endurance .

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