March 30, 2012 in General

After getting diagnosed with HIV in 1988, I spent most of the 1990s getting ready to die. I was so weak I couldn’t get out of bed, down to just over 50 kgs at one point, miserable, angry and sick so often, bouncing between hospital and Herne Bay House, until the new drugs came along and I started to get better. But a lot of my time and energy was built around being HIV+, around medicine and illness, and the idea of death.

Even with the new meds though, and the gradual improvement to my health, I always had this sense in the back of my mind that it would all fall apart, that the meds would stop working and I’d go back to that time where my death seemed so close and obvious.
And even now I still find it hard to trust the future, to imagine I have one. But logically I know that I do, and realistically the meds will keep working for me if I keep taking them correctly.
I’ve been thinking about all this lately as I try and re-shape my life and search for a career – again.
Physically I am in pretty good health – a bit porky maybe, not as fit as I’d like, but that’s not unusual for most guys in their 50s. Like nearly all of us long-term HIV people, I get tired, really tired, so fast and so easily. It’s not surprising I guess – after all I am on intensive daily chemo-therapy to control the virus – living with medication like this means you pay a price, but it’s still better than the alternative.
Emotionally though I think the toll has been great. HIV has shaped my life in ways I wouldn’t have chosen – I’ve adjusted and worked to make the most of it where I can, but that’s not been easy.
I have suffered depression at different times, again, something very common in HIV+ people, I’ve been suicidal at times in the past, again, not that unusual for those of living with the virus, and have found so often that guys see the virus before they see me, it feels hard to form a relationship or find a lover.
I also feel like it wiped out my 30s and early 40s.  That’s a big chunk of my life to have lost to the virus.When the new drugs first came through I was taking 47 pills a day, my entire life and what I could do, where I could be, was built around my medication. At least 15 years of my life was totally dictated and dominated by HIV, sickness, pills and the thought of death. That’s a lot to live with.
And HIV is different. On the one had you could say it’s now “just a manageable chronic illness, like diabetes” – that’s the line we hear all the time. And technically it’s true.
On the other hand, I can’t think of a medical condition that carries the same level of stigma and fear. Even today. Even from people you’d think would know better, like health professionals, or gay men. And I do understand –  that to some extent – HIV brings death and sex together, and that’s a really explosive combination. HIV frightens people in a totally illogical way.
Generally speaking, most people know next to nothing about HIV or living with it, and run old stereotypes and images through their minds when they think of it. It’s hard for those of us with it, which is why so many poz people keep their HIV status to themselves. People just don’t understand, and it’s not our job to educate everyone we meet about it.
It just feels like a paradox, that I’ve been lucky enough to come through this terrible plague, that I nearly died, and here I am, 50,  unsure what to do with my life or where to direct it.
I’m not complaining, I’m glad I’m alive, trust me. And I know so many wonderful guys who died, who were just not as lucky as I was, so whenever I start feeling too sorry for myself about all this I remember that at least I’m still here.
But no matter how much better things are for my body, it’s still tough, it still takes work. It’s taught me a lot, and I think the overall experience of it has made me both kinder and harder. Kinder as in more compassionate and empathetic, but also tougher, harder, as in “Don’t waste my time with bullshit!”
It’s taught me to be more assertive I guess. I speak as I find, and if that offends some I don’t really care. I don’t feel some Christ-like need to shower everyone with love – some people are shit and I’m happy to call them on it.
Sometimes I daydream about what my life would have been like without it – whether I’d have returned to NZ or not, what else I would have done. But that’s not reality, and being as intimately acquainted with death as I have been has made me very clear on the need to stay in tough with the real.
Everything changes, I know, nothing is certain but death and taxes, yadda yadda yadda. But living with HIV is different. It does go on having an effect long after the worst aspects of the physical side are gone.
But we keep going.