When failure is not an option: World AIDS Day 2011
When you’re HIV+, blood tests aren’t anything out of the ordinary. But, sitting in the queue at the hospital last Monday, looking down at the form I’d been given, two words hit me like a punch in the guts:
I shouldn’t have been surprised, really. Looking back, the signs were there: Night sweats, diarrhoea, low energy, sleeping all day, unexplained rashes, various other niggles and twitches. I had become complacent about my continuing good health. I treated the ‘niggles’ as separate incidents and didn’t consider the bigger picture, when really, my body was jabbing me frantically in the side saying “pay attention to me.”
However, before you all picture me getting rushed off to an isolation unit and wrapped in cling film in case I catch a cold, let’s backtrack for just a sec. ‘Treatment failure’ is not the same as say, ‘organ failure’. It just means the meds aren’t doing what they’re supposed to. There are other options out there, far more than in the 80s and 90s, thanks to the men and women of medical science and their never-ending quest to find new ways of fighting the virus.
But it was still enough to raise my viral load above the ‘undetectable’ level for the first time in almost four years, and put a worried look on my doctor’s face.
Now I’ll admit I’m one of the rarer cases, but I’ve never got on with those bloody pills from day one. Over multiple experiments with different combos, the side effects have been constant, varied, and always unpleasant. The first regime sent my cholesterol soaring to 6.5 (not great for a then 28-year-old), the next one gave me a level of insomnia that would leave me awake for four days at a time, the one after that gave me the shakes, and the latest hasn’t worked at all.
I’m now back on the regime with the four-day insomnia bouts while they figure out what they can give me now. It’s a waiting game.
Is it manageable? Yes.
Is it fun? No.
Do I like worrying that, despite our stringent safety measures, medically speaking, I’m more infectious to my negative boyfriend with a raised viral load? No. It’s excruciating (by the way, take note all you idiots who don’t get tested regularly. Untreated HIV makes you more infectious).
Am I looking forward to a month of side-effects on the old drugs and possibly more when I get a new regime? Absolutely not.
For the first time since I got diagnosed, I’m resenting having HIV. With all these copies of the virus running riot in me, I feel somehow ‘dirty’ inside. I resent the side effects, I resent taking the pills every day. I resent the fact that my body is now so full of chemicals my sweat turns my white bedsheets yellow, I hate the blood tests, the needles, the paranoia when I cut a finger and I don’t have a plaster to hand*. It’s a choice I make to be so cautious, but it’s grinding me the hell down.
But most of all, I just want to make sure the person I love never goes through all this himself; which means no more messing about with my regime. Side effects I can cope with. Bad health and being infectious to my partner I can’t. So I’m staying on the old regime for now.
I’m not a saint. I’ve played my part in the onset of this blip and it’s kicked me into touch. I’ve been lazy with keeping appointments recently. I became complacent that the pills were doing their job. I’ve gotten ‘used’ to being healthy. I guess what I’m trying to say is that if you take care of your sexual health, respect yourself and stay informed, you don’t need to go through all this. HIV isn’t the greatest threat to your sexual health. It’s ignorance.
To quote a good friend Mike, (@LondonVoiceOver on Twitter): “Those of us who live with it and thrive may inadvertently send the signal that it’s no great shakes. It is, and no one needs to catch it to prove a point.”
*please see comments for medical information on this