Health | 10 things I’ve learnt about HIV (since becoming positive)

PAUL HIGHSMITH TELLS HOW RECEIVING AN HIV DIAGNOSIS TWO YEARS AGO PROVED TO BE LIFE-CHANGING IN ENTIRELY UNEXPECTED WAYS.

I asked for an HIV test because my nasty flu segued into drenching night sweats, which wasn’t a good sign. When I got the news that I was positive my doctor said he’d been dreading telling me all day.

I went on tablets for a year (five tablets twice a day, never missed a dose) and have remained undetectable off medication for the last 12 months.

I thought I would share ten major discoveries. They won’t necessarily be popular but they should be of interest to all readers, positive or negative. It’s not quite a manifesto and certainly not a confession, but simply one person’s viewpoint on HIV in 2004.

Being HIV-positive is not an identity. There is a type of HIV-positive man (sometimes found in fiction) who is, I’m sorry to say, a depressing whining victim. Becoming HIV-positive is in some ways the best thing that’s ever happened to him. With the feeling of belonging he once embraced in the gay community now faded, this man now has new brothers: in HIV support groups, at “poz” weekends away, even among a new and infected social network. This is the man my doctor warned me not to become. Being HIV-positive once necessitated a banding together for sheer, desperate survival. For those that truly can’t cope these groups are still useful. But I’m grateful I didn’t succumb to the siren charms of taking on an HIV-positive “identity”. Being defined by a disease is not a life-affirming decision. Don’t say “I’m HIV”. People with cancer don’t say “I’m cancer”.

There are disadvantages to being HIV-positive that nobody discusses because they’re not nasty enough. I’m not talking about the side effects from medication, I’m talking about devastating fuckers like not being able to have children. Oh, it’s possible for the virus to be farmed out of sperm in an elaborate laboratory process but ultimately I couldn’t expect any woman to take such a chance. Even though I’m yet to feel even remotely paternalistic having the option taken away is gut-wrenching. I also can’t legally travel to the United States (or to China, Fiji or Indonesia). Of course everybody lies on the forms to get in - but you can’t stay and work in the US even if you get a green card, because they test you. And you can’t travel with medication either because post-11 September they will find the pills - they do know what they’re for and they will send you back.

Some HIV-positive people are reckless, amoral lunatics who should be in prison. I once went home with a positive guy who gleefully told me he never uses condoms because he finds it hard to cum and that he has no problem fucking guys at a particular sex-on-premises venue on a regular basis without any discussion about safe sex. Treatments for HIV are better now, he argued, so it wasn’t a big deal. Considering the state in which I and many others rock up to this venue at the end of a booze- or drug-filled night his story still fills me with the dry horrors. AIDS organisations bend over backwards (pun intended) to avoid demonising such characters, with talk of shared responsibility and so on, but ultimately the knowledge you are HIV-positive means you have a moral obligation to be safe. Yes - moral. The pressure not to condemn anyone’s behaviour stems from a time when positive people were vilified by everybody and dying just as often. AIDS organisations are also deeply reluctant to criticise drugs that remove sexual inhibitions and are surely contributing to a rise in HIV. This is because there’s some mythical drug user out there who, if he gets a finger wagged at him, will get all sad or just behave worse (apparently). As a result, fewer warnings about such drugs are issued to young impressionable gay men, who are a demographic also worth saving.

Being HIV-positive might not constitute an identity but it has provided a startlingly different perspective on representations of AIDS. AIDS narratives in plays, films or books, now seem insubstantial, maudlin or just plain stupid. Even well-meaning buggers wearing red ribbons raise the hackles. Who needs the reminder? Cultural connections came from unlikely sources. For me, it was the sixth season of Buffy, when the title heroine is brought back from the dead. Haunted by memories of heaven, Buffy is treated tenderly and distantly by her well-meaning friends, bonding instead with vampire pal Spike, because she feels like the walking dead. Having faced death with convulsive howling on day two, I consumed Buffy like it was chocolate.

Being HIV-positive made me realise who my friends were, an instinctive realisation that hit the moment I was diagnosed. I knew who to call first, who would dedicate their weekends (and many months) to creating happy diversions and who would listen without offering advice. Acquaintances were dropped instantly. It shouldn’t take a cameo from the Grim Reaper to spark a spring cleaning of the address book, but this did.

HIV is just a virus. The sum total of my philosophical and spiritual catharsis is simply: This Is Something That Happened. The neat narrative of fatalism is tempting but tragic; this did not happen in order for me to focus on what was really important, because I already was. It also wasn’t a Christian parable about a slut reformed. I determinedly kept on slutting, as carefully as before. The buck stops here, but the fucks don’t.

Becoming HIV-positive is embarrassing. Sure, fear of death was a major emotion, but a sense of embarrassment was unexpected. I had, and have, a high level of knowledge about HIV. My brother-in-law said: “He can’t have AIDS, he’s too smart.” My infection was probably an accident, or perhaps a moment of recklessness on behalf of my beloved/reviled sire, who shall remain unnamed. (Buffy again: the guy who infected me now seems most like my vampiric initiator - bizarre, lame and probably not good for my mental health.)

Conventional Western medicine is best. Cemeteries the world over are bulging with dead AIDS patients who didn’t take their pills and thought vitamins or acupuncture alone would save them. AZT was extremely toxic, but the drugs that are now available are a lot better. People with HIV who effectively undermine or even cancel the effects of their medication by not taking every dose are not only looking a gift horse in the mouth, they’re standing behind it waiting to get kicked.

Weird things happen when your immune system is compromised, even when you’re wonder-undetectable-boy. Since becoming positive I’ve become allergic to penicillin and developed psoriasis and psoriatic arthritis. The psoriasis flares up only occasionally, but it’s disgusting, embarrassing and deeply unsexy. (Please remember this when you’re in a sling on crystal, friends.)

Finally, and perhaps most horribly, I have learnt that I’m not prepared to be “out” about being HIV positive. This story is written under a pseudonym. This is because despite being a confident, successful, charming, sexy (I’m told) and altogether happy chappy, I’ve realised that most people don’t really like HIV-positive people. Not really. They think we’re sad, or weak, or a bit stupid (especially if you seroconvert this century!), or slutty, or lame, or disgusting. I’ve told my family and I regret it. I thought after years of their ludicrously gay-supportive attitude they would have coped with it reasonably well. They have, but the subtle shift in their behaviour hurts in ways beyond description. It’s a tragedy of breakfast tables, not of operas.

It’s really, really quite simple. Use condoms and water-based lube all the time. I know it’s boring. I know you’re sick of reading it. Just do it.