The shadow of AIDS
I'm from the generation that was raised to be well and truly terrified of AIDS. The first blitz of leaflets and adverts that came with the understanding that it could affect heterosexuals too arrived just as I was starting to take an interest in the wider world, and I read all the information with fascination.
As a child with no intention of having sex or using drugs, I could treat it all as interesting but ultimately irrelevant. Soon there were jokes on the playground, punning on the fact that this disease that shocked the adults had the same name as an ordinary English word, or that "are you positive?" took on a whole new connotation in this context.
The leaflets didn't just explain how someone might get AIDS; they also explained how you couldn't get it. That there was no risk from sharing linens or crockery or from using the same toilet. I suppose this was an attempt to address what was already a widespread and damaging stigma towards HIV+ people, and while I took in the facts, I was also, in subtler ways, picking up that stigma too.
I didn't realise how much I'd picked up until it affected me directly. Just before I turned 18, I embarked on a very ill-advised sexual relationship that was mainly motivated by desperation to be needed and a conviction that if I got pregnant, it would prove to me once and for all that I was really a woman. My amicable ex was shocked to hear that I wasn't using protection; I was ashamed to tell him I didn't want to, so downplayed it by saying my new boyfriend cared too much to ever put me at risk.
It took me many years to admit that he did not in fact care, but only about six months to realise that his care could only protect me from risks he was aware of himself. I went to a blood donor session, and during the intake paperwork I started to see the risks as an outsider would see then. I had had unprotected sex with a near-stranger, whose anecdotes about his life included drug use and sex workers. I could no longer be sure I was straightforwardly negative.
My reaction was pure emotion and drew on the fear and stigma that I had absorbed without realising. I didn't try to evaluate the risk I'd run, I just began thinking of myself as intrinsically contaminated. When my amicable ex, a day or two later, noticed I was feeling low and offered me a hug, I pushed him away lest I contaminate him too. I knew logically that, even if I had become infected, a hug wouldn't be enough to infect him. But emotionally, I felt too dirty to be safely touched.
I had nobody I felt safe confiding in, so I stewed silently until it faded into the background radiation of messed up things I was trying to live with that summer. It wasn't until I went away to university in the autumn, in the safe anonymity of a big-city hospital, that I convinced myself it was better to take a test and know for sure than to live with the fear bubbling under the surface.
Before the test, I had to speak to a counsellor, who asked why I needed a test. I thought that meant I had to justify my worries, so I dragged out every accusation I could think of towards the man I had so foolishly trusted. Then, having got into a groove of sharing dirty secrets, I admitted for the first time that I'd been trying to get pregnant to fix my gender feelings. In 1997, this apparently made me sound like a deeply closeted lesbian, so the reassurance I received was rather misplaced, but I felt slightly better for getting it into the open.
The final question the counsellor asked was whether I was prepared for a positive result. I replied that I was not, that I didn't think it was possible to reconcile myself to such frightening news while it was still hypothetical, but that I would rather know for sure than go on living with uncertainty.
The blood draw was straightforward enough, and I also had several uncomfortable swabs taken to check for other infections I was at risk for. Then came by far the worst part of the ordeal: waiting for the results. They promised an HIV result before the end of the day, with a longer wait for the other tests, but having made up my mind to know the truth, i spent the afternoon wracked by anxiety.
When I came to get my results, I was so keyed up I could hardly think. The clinician began, "HIV and hepatitis..." and I became confused because I'd been told to wait up to a fortnight for the hepatitis result. That filled my mind and for a moment drove out the fact that the sentence finished, "...both negative." There was no rush of relief, just a slow sinking in that I had escaped unscathed after all.
In the days that followed, I put my feelings into some kind of order by writing a personal essay structured around the old "are you positive" joke. I toyed with a story in which the main character receives a negative result despite running much greater risks than I did, but I didn't know where to go with it beyond that first scene. And then I just moved on to other things. I never consciously tried to reckon with that fear and that vicious internalised stigma, but it was never really an issue again.
Things are very different these days. I have an HIV test every three months, and treat it as an obligation roughly on a par with a dental check-up. I take PrEP, which means that if I did have an unknowingly positive partner, I'd be very unlikely to become infected. And if the worst happened against all odds, there's now treatment such that I'd be able to live an almost completely normal life. In the space of a generation, this disease that terrified us so much has become manageable, and there are even hopes that it will be curable soon. That's pretty awe inspiring.
Attitudes have changed much more slowly. People still say on social media that they wouldn't feel safe having an HIV+ partner - even though someone who's positive and having effective treatment is a much safer bet than someone who's sexually active but not testing regularly. For myself, I can't shake a sense of self-consciousness, an awareness of how much trust I'm placing in modern pharmacology to keep me safe. I don't think I would go through the same terrors I felt in 1997, but I can't be sure. I was raised with AIDS as the great terror, and those feelings don't just disappear.