I was recently rattled from both sides by a PositiveLite article and the reactions to it. I took to my keyboard to rattle back, as calmly as possible. You will find this article also posted on PositiveLite here.
I'm a gay man of a certain age. My experience with HIV in my community goes back to the beginning, even if my awareness of my own infection does not. I was there as we learned from the first reports that something was going very wrong and that – given apparent indifference on the part of many, but not all, authorities – the community had to do something about it. I have watched friends die. This long history has shaped my relationship to HIV and my attitudes about it.
Having been diagnosed at a very advanced stage of my HIV infection in 1997, I will never be sure about when I might have been infected, but I'm pretty sure I know how, not having had a blood transfusion or injecting drugs. Who was a question I studiously avoided because, like others of my generation, I embrace the concept of shared responsibility and I believe that my energy is always better spent taking care of my health rather than seeking to assign blame outside of myself.
Another reason that I have (mostly) avoided trying to identify the who and when of my infection is to avoid the distinction between the "generation which didn't know better" and those "who should have been able to avoid HIV infection", a horrible distinction that fingerpoints at a younger generation when they, like we, were just being human and pursuing our amourous interests. No human can fault another for having an occasional lapse in judgment or action that might have led to exposure to a risk of transmission. I've never met anyone who sought it out or who sought to transmit intentionally; I look on it as a hazard of our time.
I am also an aging poz guy living with all the benefits of developments in treatment, and that is shaping some of my perceptions of HIV and my relationship to it, but these are layers added on top of my previous baggage. When I was diagnosed at 37, I didn't think I would ever be 53, as I will be later this year. I'm still banking on not making it past 65, as I have no retirement plans beyond poverty and loneliness (c'mon lottery ticket!).
I have excellent access to health care, and that is surely the reason for my relatively good health. I am preoccupied by the fact that others don't have this access – including people living with HIV who have a more tenuous relationship with "the system," but also many of my HIV-negative friends who are part of this community that is disproportionately living with this disease. I hope that we can all decry that lack of access, and do something about it, without blaming me for taking up too much of it. Without it, I will probably die, but without it I fear that others will find themselves in my place, living with HIV.
I've had a few of those serodiscordant situations that we seem to be talking about more these days. Of course, we now like to call them serodifferent, because we don't want to sow the seeds of discord with our terminology, but I think we all understand what it means whatever the term used. I like to think that I have lived up to my own expectations of myself in each of them, that I have avoided transmitting HIV and that I have treated my partners with the respect that I expect for myself.
I remember a time early on, before I knew of my own infection, when I met one of my favourite bartenders outside the bar after hours (there was always a bit of a crowd milling about after the bar closed in those days). This unattainable object of my desire struck up a conversation with me and, as he seemed to be expressing some interest in taking me home with him, added the information that he had HIV. My reaction was similar to that of others in my community from my generation, at least at that time: I told him that wasn't a deal-breaker for me, that there were plenty of ways for us to enjoy ourselves without having to worry about HIV transmission. The relief that washed across his face bespoke the ravages of past negative reactions, and I felt bad for him about that. After we got to his place, he had more revelations for me, and we took more precautions to make sure that I didn't get anything else either. And we both (well, I can only speak for myself) had an excellent time.
I spoke of another of my experiences here. A time when I knew my status and didn't disclose until asked (after the fact), but ensured for my own mental peace that I did nothing that would have possibly transmitted the virus I never wanted to someone else, even someone I knew only fleetingly. I know I didn't disclose because I feared the response would be overblown and negative, and the reaction when I responded honestly to the question asked late confirmed that for me. If I am at all disappointed in myself, it would be in not affirming my status at the outset, but in my defence that is often unrealistic in the face of expected hostility. I would note for those readers about to accuse me of being a criminal that I then satisfied all the criteria as set out by the recent Supreme Court decision to NOT be criminally responsible, so please keep your insults to yourselves.
I had another experience that put me in the position of my bartender friend once. We were still in the bar and the "run for the exit" lights had not yet been lit, but the guy to whom I disclosed my status was straightforward and realistic in his response. We went to my place and we were able to negotiate what we both felt safe about doing. He could express his fears, even the irrational ones, and I could respect his choices and not be slighted by them. Again, we (there I go again!) had an enjoyable time.
Let me add another one. A guy I met on the street who came to my place, who disclosed his status to me upon hearing where I worked (always a good sign that knowing I worked for an AIDS organization made him feel comfortable enough to disclose his status to me). His disclosure led to mine, and he proposed an activity (not the one you're thinking of) that ran up against my own hardwired behavioural restrictions that are part of my HIV baggage. I couldn't bring myself to do it, we discussed it (not discussion group style, but the quick exchange of words) and we adapted ourselves. I knew that what he was asking of me was not particularly risky and, considering our seroconcordance, not at all risky, but I couldn't go there and he wasn't going to take that personally.
Somewhere in all these tales and thoughts I would like to find a lesson, for me and for others. If we could all be counted on to treat each other with respect as human beings, we might be able to end this epidemic. I should be able to disclose my status and not be faced with automatic rejection and fear. I should also be able to work with the fears and limits of my potential partners. For some, this might mean not having sex at all, or having a different kind of sex than either of us set out to have. But we should still be able to be respectful in how we express ourselves.
Or maybe we should just call me Pollyanna.