Are YOU over it?

I don’t think we’ve ever talked about being in a Post-AIDS era here before, even though that term has probably more relevance today than when people first started using it.  That was around 1996. The recently diagnosed may not even recognize the term, so here's a little history.

The term "Post AIDS" seems to have first seen the light of day not long after protease inhibitors became generally available. The 1996 International AIDS Conference in Vancouver has in fact gained some notoriety as that time in our history when experts were suggesting the AIDS crisis was over. It was also in 1996 that Eric Rofes advanced the cause with a book called Dry Bones Breathe: Gay Men Creating Post-AIDS Identities and Culture. In it, Rofes said that many communities of gay men--including some HIV-positive men--are "over it," and that AIDS organizations need to face the new reality of gay men's lives. You can read an interesting interview with Rofes on this topic here.

The Post-AIDS question (are we or aren’t we over it?) was a hot topic for discussion in those days. This scholarly article from 1998, for instance, addresses “the change from a terminally ill person to one that is chronically ill, and the psychological, social, and existential changes that occur during this shift in identity. (It focuses on) the fears involved with losing support, disability income, having to possibly re-enter the work force after having not worked and losing job skills.” Sound familiar?

In more recent years “Post-AIDS” seems to refer to a new sexual era where having lots of sex has become OK again and where condoms aren’t necessarily de rigueur. Here’s an example: Melrose Place branding itself as Post-AIDS TV.  

Fast forward to 2011. It’s politically charged, and not necessarily correct, to suggest now that we are in a Post–AIDS era, even though AIDS cases are way down in the developed world.

But in 2011, am I over it? In many ways, yes – and I said so in a recent article.  Its been a long time, after all. since my diagnosis in 1993. The related trauma, psycho-social and health issues I experienced in those early years are largely water under the bridge, the subject of their own “it gets better” campaign. But let’s distinguish for a moment the I and the WE. Are WE over it?   Probably not. Not while infection rates continue unabated. Not while stigma is out there. Not while people are being criminalized for behaviour which doesn’t even involve transmission or ill intent. WE are definitely not over it.

WE are not over it, despite the fact that many people with HIV have their viral load suppressed, immune systems perhaps restored to pre-infection levels and facing the prospect of a normal life-span. It's true that we're likely better off health-wise than we have been in a long time.  We don’t always acknowledge that, for reasons that are quite complex.

Interestingly, the only sector where the “AIDS is not the threat it once was” argument is made at all consistently is by those fighting criminalization of non-disclosure, where it IS necessary to argue, and rightfully so, that things have changed, that people are often less capable of transmitting the disease than ever and that the disease, even when transmitted, is rarely fatal.

Why the reluctance from the rest of us to acknowledge the huge leaps in life expectancy, in quality of life of most of those living with HIV? I think there are two reasons. First, it implies that we should let up on prevention efforts. But nobody wants that. HIV remains a serious disease in terms of both its impact on the person infected and, to be pedantic, on the cost of the health care system. It would be foolish to let up our efforts and let the virus win. Secondly, though, reluctance to admit the crisis is less devastating than in the old days stems from the fact there is SO MUCH invested - in jobs, dollars, lives - in pretending that nothing has changed.

In any event, I’d argue that WE as a society are NOT post-AIDS. INDIVIDUALY, though we CAN be post-AIDS, we can be “over it” – and that there is absolutely nothing wrong with that view of the world. As long as it takes in to account that post-AIDS in Canada has little relevance in, say, Sub-Saharan Africa.

So yes, I’m sort of over it. That in a way is an odd statement coming from a guy that, thanks to Positivelite.com and a few other endeavours, spends at least 50% of his waking life devoted to all things HIV. But really we are talking about an attitude, a relationship, a negotiated truce with the virus, which allows us to say we ourselves are over it, even though we continue to fight with others for those who definitely are NOT over it.

But how typical am I? Ask a sample of HIVers whether they are over AIDS and I suspect you’ll get a VERY mixed response. Some speak with their feet – continuing to go to work, socialize and enjoy life as if nothing had changed other than a dint to their psyche which they’ve perhaps recovered from, or at least keep hidden. Others see themselves as warriors in an epic and ongoing battle, dealing with horrific side effects and really no better off than HIVers of two decades past. In truth I suspect the reality for many is somewhere down the middle.

A few years back when there emerged a groundswell from the medical establishment redefining HIV as a chronic manageable condition, which technically it is, there seemed to be much opposition from the ranks of HIVers. I can see their point. True, people may not be dropping dead much from HIV/AIDS, but the condition has a complex set of collateral social issues (say hello, stigma) that make it quite different from most other chronic manageable conditions.

And let’s be clear, some of us are enduring a chronic but NOT-so-Manageable condition. Me and my peripheral neuropathy riddled feet are probably not a bad example. In fact the phenomenon of chronic but not-so-manageable was referred to in a recent article in The Body here. The arguments there will ring true for many, I know.

Attempts to normalize the disease, to throw it in with other conditions for funding purposes, for instance, where previously it was distinct, are ongoing. We’ll need to get used to them. They represent an almost inevitable trajectory for the health care system, and a bitter pill for many HIVers to swallow. I think HIVers really have a challenge here. There HAVE been real changes in the disease’s profile. We HAVE become accustomed to living with HIV, to wrestle it to a truce. It’s taken a great deal of blood, sweat and tears, literally as well as figuratively.  But some of us have become comfortable with our relationship with the virus. We don’t necessarily like to see that hard-earned relationship tampered with, to be downgraded. Its unsettling for folks who have had one hell of a ride already, for instance, to think that “the system” may decide they are fit for work again, for instance, when they have grown accustomed to living a life defined by their disability. Its unsettling to hear, whether true or not, that HIV is no big deal any more.

In any event, this POST-AIDS era, if one can in fact call it that, represents an interesting time. Even discussing it can be uncomfortable, so we don’t. But I can’t help thinking that strategically it makes sense to reassess our individual and collective relationship with the virus, to see what has changed and what hasn’t. That is a far better course than pretending that nothing has changed at all.