Survivors of the 1980s AIDS crisis have shared accounts of their experiences.
As the UK celebrates LGBT History Month, users of Reddit revealed what it was like to be living in what felt like a constant state of tragedy.
Real LGBTI people remember the confusion, the lack of information, the lack of support from the government because of the suffering from the virus known only at the time as GRID (gay-related immune deficiency).
‘I’m a 62-year-old gay man. I thankfully made it through the epidemic that started in the early 80s and went right through the mid-90’s. You ask what it was like? I don’t know if I can even begin to tell you how many ways AIDS has affected my life, even though I never caught the virus,’ one user said.
‘By the early 80s, I had what I would consider a really large circle of friends and acquaintances and once the epidemic really started to hit, it was not uncommon to find out three, four or more people you knew had died each month. We set up informal and formal support groups to look after our friends who took sick. Feeding them when they would eat. Changing them. Washing them. Acting as go-between with families who “were concerned” about their sons, nephews, brothers, etc., but wouldn’t lend a hand to help because AIDS was, you know, icky.
‘After they passed, there were memorial services to plan with no real time to grieve because when one passed, you were needed somewhere else to begin the process all over again.
‘I kept a memory book/photo album of everyone I knew that died of AIDS. It’s quite large to say the least. Who were these guys? These were the people I had planned to grow old with. They were the family I had created and wanted to spend the rest of my life with as long as humanly possible but by the time I was in my late 40s, every one of them was gone except for two dear friends of mine.
‘All we have left of those days are each other, our memories and pictures. I hope that statement doesn’t come off as pitiful though. I am fit, active, healthy and you know what? I enjoy every single day of my life. I enjoy it because most of my friends can’t. In my own personal way, I want to honor their lives by living and enjoying mine.’
Another user said: ‘It was flat out scary. every guy you met was like a possible time bomb. especially the early period when we knew very little about it – didn’t know if you could get it by kissing, by holding hands…
‘Then lots of your friends or friends of friends get sick and sicker and then die. And you never ever quit being really really fucking pissed off about the whole thing. I’m alive today due to sheer randomness.’
And another said: ‘If you were living in the Castro in San Francisco, everyone in the neighborhood was gay… So it wasn’t just your friends that were dying, it was your whole neighborhood. One day your mailman would be replaced, the next day that flower shop was gone… You wouldn’t be invited to the funeral, so it was just like people were disappearing.’
‘It was madness. It was terribly cruel,’ another Redditor said. ‘It was inexplicable and unexplained, for a very long time. Research was underfunded, and in many cases large institutions and public figures rooted for it to be happening. People died suddenly of unexplainable things. Toe fungus! Tongue thrush! Rashes. Eyes welling up with blood. Horrible shit.
‘Everyone knew it was hitting gay men, nobody knew what it was. They called it the gay cancer. People were very superstitious. I had handfuls of groceries and man lectured me on not pressing the elevator buttons with my nose because I could catch AIDS from it. Yes. That happened.’
A lesbian of the era said: ‘While I was not ‘at risk’ (per se, we know more these days), we all lost many good friends. It is true that there is a somewhat mystifying (to me) separatist attitude between some gay men and lesbians, especially back then, this tragic time really brought us together.
‘Sitting at the bedside of a terminally ill friend, and just holding their hand when everyone else was just terrified, was a gift I was one of those willing to give.
‘No one should die alone, and no one should be in the hospital on their death beds with family calling to say “this was gods punishment”. My friends and I, men and women, acted as a protective layer for ill friends, and companion to mutual friends juggling the same, difficult reality of trying to be there, and be strong when we were losing our family right and left. Difficult times, that should never be forgotten.’
Another Redditor paid tribute to the role of lesbians, calling them ‘every bit as heroic as soldiers on the front lines of any war’.
‘These women walked directly into the fire and through it, and they did not have to. And that they did it even as some of the gay men they took care of treated them with bitchiness, scorn, and contempt.
‘It was, at the time, not at all unusual for gay men to snicker as the bull dyke walked into the bar with her overalls and flannels and fades. Much of the time, it was casual ribbing which they took in stride. But it could also be laced with acid, especially when lesbians began gravitating toward a bar that had until then catered largely to men.
‘When the AIDS crisis struck, it would be many of these same women who would go straight from their jobs during the day to acting as caregivers at night. Because most of them lacked medical degrees, they were generally relegated to the most unpleasant tasks: wiping up puke and shit, cleaning up houses and apartments neglected for weeks and months. But not being directly responsible for medical care also made them the most convenient targets for the devastating anger and rage these men felt – many who’d been abandoned by their own family and friends.
‘These women walked directly into the fire. They came to the aid of gay men even when it was unclear how easily the virus could be transmitted. Transmission via needlestick was still a concern, so they often wore two or three layers of latex gloves to protect themselves, but more than once I saw them, in their haste and frustration, dispense with the gloves so that they could check for fevers, or hold a hand that hung listlessly from the edge of a bed whose sheets they had just laundered.
‘They provided aid, comfort, and medical care to men withering away in hospices, men who’d already lost their lovers and friends to the disease and spent their last months in agony. They’d been abandoned by their own families, and were it not for lesbians – many if not most of them volunteers – they would have suffered alone. And when there was nothing more medicine could do for them and their lungs began to fill with fluid, it was often these same women who’d be left to administer enough morphine to release them, given to them by the doctor who had left the room and would return 15 minutes later to sign the certificate (a common practice at the time).
‘I knew a woman around that time who’d had at one point been making bank in construction. But at the outset of the AIDS crisis she had abandoned her career to pursue nursing instead, and was close to her degree when we were hanging out. She was a big, hearty drinker, and fortunately so was I. We’d been utterly thrashed at a bar once when someone whispered a fairly benign but nonetheless unwelcoming comment about her. Middle fingers were exchanged, and afterwards, furious and indignant, I asked her, Why do you do it? Why did you abandon a career to take care of these assholes who still won’t pay you any respect?
‘She cut me a surprisingly severe look, held it and said, “Honey, because no one else is going to do it.” I remember feeling ashamed after that, because my fury and indignation weren’t going to clean blood and puke off the floor; it wasn’t going to do the shit that needed to get done.
‘HIV killed my friends, took my lover from me, and tore up my life. During that time, I did what I could. But nothing I did then or have ever been called to do in my life puts me anywhere near the example set by the lesbians I knew in the 80s and 90s. I’ve felt obligated to remember what they did, and to make sure other people remember it too.’