I feel lucky.
A unusual thing to say about having HIV, but, I do. Its true.
I read articles and see programs about the state of HIV treatment and care in other countries and I always come back to the same thing.
I’m one lucky guy.
When I was first diagnosed and thinking about medication, I was like many people “oh god, I’ll do anything to get rid of this thing, a deal with the devil? Where do I sign?” At the same time I was terrified though, of side effects, about looking like an AIDS ghost. That sounds awful I know, but we sadly live in a community that judges. Queens can be fierce. I knew I could live with this virus , but I had no idea what drugs were available or what their side effects actually were, I was scared as hell.
Fortunately, I was diagnosed quite soon after being exposed, my (wonderful) doctor told me about this ‘hit early hit hard’ regime. Basically it took advantage of the fact that the virus hadn’t got a good hold of me yet. Drugs would help my body mount a defense, then I’d stop the drugs after 6 months and let my body carry on with the job at hand.
So I got on board.
Going on medication certainly helped to calm the panicky voices in my head. I felt like I was taking positive steps to control this monster virus, but at the same time it would be only a short term commitment. Surely any side effects over such a short period wouldn’t be too great right?
My biggest fear at the time was people finding out. That nasty fucker, the stigma attached to HIV. I found myself in a sweat going to the (already out of the way) pharmacy to collect my meds, hiding my stash in the most obscure places and madly scratching my name or identifying details off the empty pill bottles before I threw them away. I started having loads of vitamin pills in my bathroom so people who saw me taking pills would assume that it was vitamins. Paranoid much?
The first week I was ridiculous. With every itch and every pimple or bump I thought, “oh no! it’s a bad reaction to the meds!” Every time I farted, I thought, “oh no! I’m getting chronic diarrhea from the meds!”
Outside of my fertile imagination, there were no such problems. The meds worked a treat! In no time I had an undetectable viral load and healthy T-cells. Two pills in the morning and two at night. Piece of piss. I had a fancy new phone that I was addicted to so it made sense that I’d set reminders morning and night. Simple, and so effective.
Cut to six months later and my doctor reminds me, its time to stop the meds… WHOA NELLY! Um, I’d become quite comfortable with this medication thing and especially with this virus being under control. I even put vitamins in with my meds in their daily pill box, to blur it in my mind a little. I could almost forget I had it.
Eventually after many discussions with my doctor, I was on board once again. This time to stop the meds. Encouraged by the fact that I had only tried one regime, so should my body not be able to look after itself, there were plenty others I could try … Here goes nothing … and whaddaya know? Good as gold … Healthy as ever and undetectable without drugs for years and years. See what I mean? Lucky.
So now cut to nearly 9 years after that and I’d become a little lazy with my testing one year, and not only left it 8 months between tests, but left it 5 months after that before going back for my results. Oops. (The good part in that story was that I was still otherwise in great health with no real need for doctors visits.) Anyway, thankfully I went back to see my doctor and was seriously shocked when I found out that my T-cells were below 500. You know, that marker where the doctors start recommending meds. Not far below, but below, and that viral load was dancing around making itself very detectable indeed.
Holy shit it was panic stations in my heart and head all over again.
My kind and gentle doctor, “Have you considered maybe its time to start meds?”
My head, “Ugh! – But wait! – What happened here? – I’ve been Superman all these years, fighting this bitch off, all by myself, why the hell have I started failing now? Shit shit shit this is the END of me I may as well just die now…”
So, I was maybe ‘a little’ upset.
My outside voice, “why yes of course doctor, I think that’s the sensible thing to do”
So I started meds. Again. The same regime, but now they’re a slow release pill so its just two in the morning. None at night. Too easy.
Within just weeks, that bitch was back in its box, undetectable, and my T-cells, well over 700 again. I was blown away when my doctor gave me the news. In tears even.
I still battle sometimes with the daily reminder that I have HIV. Especially when that reminder goes off while I’m making love with my beautiful and supportive negative husband. But overall, I still feel so thankful and lucky that Ive got this thing sorted. That our government still heavily subsidises the pills I need, that I have access to amazing dedicated HIV specialists who want to take the time to make sure I’m living the best life I possibly can with HIV. That there are researchers everywhere working tirelessly on a cure. Fingers crossed eh?
My advice to people unsure about medication is this, I’d be careful internet surfing for information as that can be terrifying. Instead, ask an awful lot of questions, ask your friends, who are on meds, or a peer support group, ask your doctors, if you don’t like your doctor, find one you like, that relationship is so so important. And then, after you’ve asked lots of questions, sift through your answers with someone you trust, a friend or your doctor and work out your options, there are plenty of them. Its your body and your health, its your life.
There are people who want the best health for you. Find them.
Oh, and I’ve taken to adding vitamins to my pill box again, its a good trick that one.