By Bob Leahy
July 19, 2012
I've never really heard people ask this question -- strange in itself when it looks like every question about HIV has been asked, and written about, often -- whether people living with HIV are inherently different. I'm talking about more prone to taking risks and thus more susceptible to becoming infected. Sure, we know all about vulnerable populations, social determinants of health and all that, which are often fingered as the culprits in HIV infections. But let's face it; the reality is that many, many people from vulnerable populations and with ALL the social determinants of health looking pretty good DON'T get infected. So what is different about the ones who do?
What's different about me too? Me, the ex-banker, me the semi-privileged white guy. Why did I get infected?
Who knows? But there are so many me's out there -- people of privilege with HIV -- that it's perhaps naïve to suggest that those social determinants of heath are all that's going on, all that's driving the epidemic. So pouring millions into addressing the social determinants of health, while producing very desirable collateral benefits, will never, ever end the epidemic. It's the plain truth that some of those, perhaps in large numbers, whose social safety nets are firmly in place are still going to get infected one way or another.
It all boils down to this: whatever our backgrounds, whatever our socio-economic status, we take risks. It's natural -- some would say admirable -- behaviour. It's just that some do it more than others. Me, I guess, included.
Bad luck can't be ignored of course, and I'd wager that's a big factor in many an infection. But I'd wager too (us risk takers do a lot of wagering, no?) that a certain propensity for risk taking is an even bigger factor. Which raises the question "do people with HIV have an attitude towards risk-taking that sets us apart from our negative brothers and sisters?"
It's kind of an impolite thought, so we seldom go there. But surely it's a proposition worth looking into. It's the case, after all, that if you are HIV-positive your past life has probably been marked either by taking one big risk or, much more likely, a whole series of risks. Risks perhaps that negative people would never think of taking.
This may be uncomfortable territory to ask, but what else suggests that we poz folks are a nation of risk takers? Well, a lot of us smoke for one, three times the national average. Some will suggest reasons for that -- self medication, for instance -- but smoking is nevertheless surely a continuation of the risky behaviour that got us positive in the first place. Ditto the use of street drugs -- we use them more than the general population, an activity that may risk health and certainly risks exposure to the legal system. Many of us aren't all that treatment-adherent either and that is as risky as hell.
There are potential reasons for all these risky behaviours, of course, and more than a few of them bounce right back to the social determinants of health. But can we avoid also looking at us -- what makes us tick as persons? Maybe we are just less averse to taking risks than most people?
If there is even a chance that this is a viable hypothesis, maybe -- just maybe -- researchers should be looking at that. Our relative propensity to take risks (or not) is not a hard one to measure. But I've seen nothing in the literature about it.
Why is this even important? It's becoming increasingly clear, I think, that how we all process risk is an issue destined to be at the heart of future prevention efforts. Or at least it should be, because even if treatment as prevention holds sway, we will still need to look at a variety of other techniques to stem the epidemic, and behavioural interventions will remain important. I'd wager (here we go again with the wagering -- see what I mean?) that HIV education and awareness won't have legs; most people -- even the young -- know about HIV now, know about condoms, know how to use them. Most too are to some degree committed to using them when they consider themselves at risk of infection. Strikes me we now need to go one step further, to look at what happens to those best intentions that see those condoms left unused, usually in the heat of the moment, And at the heart of those situations where best intentions get tossed aside is our approach to risk. Which brings me back to our original point -- we all process risk individually.
Me, I wouldn't classify myself as a risk-taker, in fact my career in the bank -- it was boring by the way -- was in risk management, of all things. But clearly I am, or I wouldn't be poz. Interesting too that while I don't have much money, I like gambling. My partner and I go to the penny slots quite often -- and enjoy it, risking a few dollars for the sake of a good time. Sound familiar?
Of course you can't talk about our propensity for taking risks without acknowledging we all do it, poz or neg. You've crossed the road, haven't you? Been in a plane, eaten too many French fries for your own good? It's part of life.
PositiveLite.com writer Michael Bouldin said it best in an article for the site: "It's not that we don't know what constitutes risky behavior; it's that it's simply not possible to always avoid it, or in a given moment even desirable. Walking a red light can get you killed; it can also get you to a job interview on time."
So really it's all a question of degree. We take risks every day. I'm just suspecting many of us pozzies have been prepared to take it one step further, because that's the way we are. Maybe, just maybe, we are wired that way.
Ok. Shoot me down. I can risk that. But you knew that already ...
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Comment by: fogcityjohn
(San Francisco, CA)
Thu., Jul. 26, 2012 at 3:48 pm EDT
You're certainly right that we take risks every day, but I think you err when you hypothesize that we poz folks may simply be greater risk takers than other people. To use a common example, untold millions of Americans get into cars every single day despite the knowledge that thousands of us are killed or injured in auto accidents every year. There are also people who play extreme sports, and they do so knowing that by indulging their desire for a thrill they may well suffer serious injury. And as you point out, most of us probably take a risk simply by eating a diet we know to be too high in fats and sugar and by failing to get adequate exercise.
But do we ever ask whether people who drive cars are somehow psychologically different from the rest of us? Do we ask that question about, say, hang gliders or snowboarders? Do we ask that question about your average couch potato who spends his time watching TV while downing beer and chips? I don't think so.
When we talk about risk, what we're usually doing is expressing our opinion about the relative value we attach to the particular risk behavior at issue. So we don't view driving as unreasonably "risky" because we find it socially useful and most people engage in it. Unprotected sex, on the other hand, is viewed through an entirely different lens, particularly when gay men are involved. A lot of our attitude toward gay male "risk takers" have been formed by homophobia (both societal and internalized), which devalues the experience of physical intimacy between two men. It's very hard to separate our attitude toward the behavior in question from our supposedly objective assessment of the risk. As gay men, I think we need to be alert to this fact whenever we discuss this issue.
Comment by: Notjustpozbutdiagnosed
Sat., Jul. 21, 2012 at 7:31 pm EDT
Oh, right, cuz negative men just never take risks, right? They never bareback with longterm partners. They never get drunk and have sex. They've never had a condom break.
No lie, the poz men I know are better than the whole of gay men I know. Yes, I said it, better. Not "more self aware", not "sexier", not "artistic" or "vulnerable" or any of the other euphemisms that describe us. We're better. No, the HIV community is not some elite club, but it's certainly not a slum of adrenaline junkies and sex addicts that negative society expects. We're better educated, nicer, more creative and usually even more likely to be productive. No doubt, this is because the difference between "poz" and "neg" is not so much between one of who has the virus and who does not, but who is diagnosed with it and who is not. This is a critical difference in behavior between us and everyone else, that to be diagnosed, and to survive with the disease, you can't be a complete mess, you have to have a certain critical level of intelligence and self-preservation.
Are we more likely to have engaged in "risky" behavior? As a population, probably. As individuals, the difference is totally obscure. I can't tell you how many times I sat there when newly diagnosed wondering, "why me and not them?". Sour grapes? Yeah, but also reasonable. I hadn't done half of the crazy stuff that "negative" guys my age were doing, and yet, there I was, gulping down Atripla and learning more about immunology than I ever wanted.
So what's the problem in vocalizing that there is a difference? Well, for starters, the very act inevitably justifies the stigma we face, that we get HIV because we're stupid, that we deserve it, etc etc. This isn't true, and it doesn't tell the whole story.
Hey, what's the difference between a gay man who enjoys his sexuality and a bareback cumslut who doesn't care about his life? HIV. Admitting this risk difference makes that even more pronounced.
Replies to this comment:
Comment by: Voorcroix
Thu., Aug. 2, 2012 at 2:15 pm EDT
I know the feeling. At age 30, I had experienced no more than 2 dozen sexual encounters and had been with a total of 8 people, all of whom were significant relationships. Yet, there I was, diagnosed HIV+. I had never done drugs, almost never drank and never engaged in anonymous sex.
Most of the people I knew, engaged in much "riskier" behavior than I ever had and remained "negative".
18 Years later, I am still faced with the fact that many if not most people who learn of my status, immediately make certain assumptions about me. I have met numerous poz people over the years that contracted HIV through transfusions, from spouses, or from rape.
The stigma persists and I for one am tired of trying to justify my status. Why should we still need to defend ourselves after all these years?
Comment by: Don
Fri., Jul. 20, 2012 at 10:04 pm EDT
Hello Bob - I read your thoughtful remarks almost hoping to see something of myself portrayed among them but did not. I acquired HIV in 1978, three years before it was diagnosed by a doctor here in L.A., but although I watched scores and scores of friends die, sat with them at their bedsides as they passed, busied myself with volunteer work to take my mind off the obvious fact that perhaps by the next weekend I too would only exist as an ethereal memory, it just hasn’t happened yet. 34 yrs and still waiting. Meanwhile, I’ve not taken up smoking, gambling to me is like throwing $20’s into the toilet, then flushing, even “playing” the stock market is anathema to me. I won’t try new medications the doctor prescribes until I’ve researched them in the PDR, I may spot a “style” I find catchy in a magazine but prefer not to be the first to wear it, in every aspect of my life I see myself as a non-risk-taker. I even decline for the most part to enter into relationships—lover-type, that is (12 yrs since the last one died)—and finally selling what has been my home for over a quarter of a century is as close to walking the edge as I’ve come in some time. An admission I will make is that several years ago I finally, wholeheartedly, converted—no, wrongly put. I became “rationally skeptical” of theism and embraced enthusiastically the atheistic core which I’d felt shrieking logic from within me since age three, although I was raised a “fun-gelical xtian” (4th generation). From my standpoint I’m afraid that (speaking for myself and many of those who went on before me) engaging in “risk” is probably not the grail our caregivers seek. I’m truly sorry this is so, but also suspect there is never going to be found a common thread which ties us all together. It is inspiring that there are other HIV infected individuals with the energy left to continue to ponder these possibilities, seek answers in thought. We do need more like you.
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Comment by: Michael
(Los Angeles, CA)
Thu., Jul. 26, 2012 at 2:04 pm EDT
I too have been infected for a long time, 30 years now. I would suspect that many of us who were infected back then were not doing anything known to be risky behavior when it came to infection that couldn't be cured by a shot or 3. We simply didn't know what was coming. I also spent my career in the banking/investment world and I would agree with Bob that those of us who Bob would call semi-privileged and I would add the privileged are of course risk-takers. We take risks all the time both in our business life and our personal life. It's how many of us get ahead and stay there. If I were to split the difference between you and Bob, I'd say that it would be after we knew what was causing this that the risk takers continued taking those risks and some but not all became infected. I'd venture to say though that even the people who think they're not risk takers probably took a risk or two which ended up in infection.
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A banker turned AIDS activist, Bob Leahy is the busy Editor of PositiveLite.com, Canada's globally read online HIV magazine by and for people living with HIV. Diagnosed with HIV in 1993, Bob has held almost every volunteer position in the HIV community imaginable, including chairing his local ASO and serving on the boards of the Ontario HIV Treatment Network and the Canadian AIDS Society. Recognized on the Ontario AIDS Network's prestigious Honour Roll, his interests lie in social media, gay men's sexual health and making HIV research intelligible for all. A long-time blogger, this ex-Torontonian lives the rural life with his three dogs and partner of thirty-one years.
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