Poz Guys: How Has HIV Changed Your Life? (aside from sex)

[bearbandit]

Odd to come across this now: most of the posts are from before I joined. Names I recognise, names I don't. Just hope that the names I don't recognise or haven't seen around in a while are okay still. Since I joined, I've worked out many of the confusions and contradictions in my head (some of them publicly). I've also seen the direction of the board change since the advent of PrEP: after all, the board is basically what we put into a framework that rawTOP provides us with. Now that guys can make a choice not to become poz, at least in areas where truvada is available as PrEP, there's a lot more about safety and less focus on "must get pozzed". I think, more acceptance that pozzing (or threat thereof) is edgeplay and good for fantasy but not for the real world.

I was in hospital when PrEP was announced, going through the most extreme side effect tenofovir has to offer, which has left me disabled. But for anyone taking tenofovir, it was needless: my ex-doctor should have seen it coming and didn't. Its frequency is 1 in 100,000 in PwHIV, and so rare in HIV- guys that I don't believe I've ever seen any data on it, and believe me, any mention of Fanconi's syndrome leaps off the screen to me! These days I divide my life with HIV into two halves: before and after Fanconi's. I was diagnosed in 1987 and given the proverbial five years to live. Spent most of the nineties with a recorded (in my hospital notes) life expectancy of eighteen months. I've written an extended piece on chasing, which started as a challenge to myself: could I write chasing fiction and make it erotic? Well you guys seemed to think so. However, would I advise anyone who asked "should I get pozzed" no I damn well wouldn't. HIV is still relatively new to medicine and, good as they are, we don't know how well the drugs will stand up to continued use. Me, I'm back on salvage therapy, having exhausted all other options. Not the most comfortable place to be.

 

Overall since I first learned I was poz I think I've been forced to look at sex (and I'm aware that the original question avoided the subject, but bear with me) and in my rush to get through the bucket list gone down a lot of bye-ways I might have missed. Similarly in life, I haven't had an official paid job since the nineties, having been unable to maintain the required level of health to manage. Pre Fanconi I was pretty liberal in my approach to life, even more so now. I've also leaned to say what I'm thinking, especially the good stuff that we so often miss out or are too embarrassed to say. I recently scared the living crap out of a friend who I'd known for four years (I spent a lot of time encouraging him to explore his inner pig) but only met for the first time earlier this year, by telling him how much I'd enjoyed the three days we'd spent together, how I'd like to see him again, and the rest of the stuff you think when you've met someone you're very attracted to someone. I had to convince him that he was safe: I wasn't going to kidnap him to get him to a registry office and marry him; I'd just had a really good time with him.

 

I've been through extreme financial shit, with my late partner having to go bankrupt, we were chased from our home by homophobes, and just as I was getting over the medical problems I'd had throughout the nineties, my late partner got sick, having been sprayed in the face by an IDU who tried to inject an artery instead of a vein. In that situation you don't have time to take precautions, you have less than a minute to get the tourniquet in place, which he managed to do, unfortunately getting HIV in the process, something we discovered much later. I was his main carer for the four years he was ill, which taught me even more about patience and taking time out for myself without feeling guilty.

We'd not bothered with the gay scene since our favourite bar closed in the late nineties and instead of adopting kids, we went the classic animals-as-babies route. I'd been involved with first gay helplines, then HIV helplines since the seventies and put the same sort of energy (and knowledge of counselling techniques) into training rottweilers. Post Fanconi's syndrome I can't walk far enough to keep a rottweiler (or me!) happy, otherwise I'd have one pawing at me now wanting a walk and supper. I still do a lot of HIV support work online: it's not unusual for me to spend most of the day at the keyboard. I think the patience I've learned over the years helps with this as well as being willing to be totally open mentally and emotionally, things I wouldn't have learned without spending so much time in waiting rooms and so on. The doctor's running late, ah well, that just means someone else is getting the sort of attention I sometimes need... And a retroactive diagnosis from my being incarcerated in that damn hospital: we (doctor and I) are as sure as anyone can be that I got it in 1980.

 

Although my memory has suffered quite a bit, I'm pleased to see jtonic's answer above: I do remember what he went through when he got his result and said something that sums it up, I think, for many: "my answer isn't that interesting". Once your past the initial shock it just becomes part of life. when I have meetings for the site I volunteer for, people are shocked by the number of pills I take - that's just normal for me.

 

I'm now facing new stuff in that I'm moving back to England to be closer to my hospital - when I was diagnosed it was never envisioned that we'd need a science of HIV gerontology, but we do. Moving alone scares the crap out of me but when I look at what I've managed to do on the time I've been poz it's not so hard to believe that I can do it. And the HIV- pig who came to visit? Well, he put it best "in another time and place we'd have been good together" which doesn't mean that we can't meet up occasionally and fuck each others' brains out... So yeah, fuck you HIV, you tried to end my life and I've ended up with a fuller life despite you.