That Empathy Thing

We all make decisions and take risks in daily life. Where in our lives we take those risks directs how those risks affect us.
 
I was considering saving this kind of diary for world AIDS day, the first of December, but every day is world AIDS day for me (and millions of others). HIV is an everyday fact of life for me, so it’s an everyday diary topic for me.

I’ve had several years to get used to having HIV...but I’m not sure the world is ready for me to be accustomed to it. I work in public health on topics relating to HIV/AIDS and other sexually transmitted infections, and even my boss still can’t handle it when I joke about it. I’ll ask her if she’s sure she wants me to do something, and she says, "Yes, I’m positive."

And I say, "No, that’s me."

This still jars her. But, frankly, if I can’t laugh at it, what’s the point of living with it? Living without laughing is just surviving. I’m not sure it even qualifies for "surviving".

In order to avoid stigmatizing myself, I chose to be open about living with HIV (with one omission). This doesn’t mean I wear a t-shirt emblazoned with "HIV+" in block letters. (The only t-shirt I have like that says "NOBODY KNOWS I’M A LESBIAN".) It doesn’t mean it’s my constant conversation topic. It means I don’t shy away from talking about my HIV. I don’t dance around it. I treat it like any other medical condition – diabetes, the flu, whatever. Health pops up in a lot of different aspects of life; people talk about the doctor and their medications more than I once realized.

When people find out I have HIV, the way they treat me is complex, confusing, and often disheartening. An example:  most of the time, their first question is, "How did you get it?"

I used to assume this reflected concern for their own risk of infection. I can’t presume that I have that kind of effect on people. People don’t look at me and suddenly think it’s possible they could be infected. Most people just don’t think they could ever have HIV. My answer, based on this bad assumption, left people unsatisfied. I have come to understand that the impetus for such a private question is more than just curiosity. It’s a matter of deciding how to view me.

People want to know if I’m a victim, or if I deserve it.

Were I to tell most people that I was infected perinatally or pediatrically, I would be an innocent victim. Were I to tell people I’m a hemophiliac who was infected via blood transfusion, I would be an innocent victim. (We have screened the blood supply for HIV for over 20 years, by the way.) I’m neither of these. I’m not the innocent victim.

If I say I injected drugs, and picked up HIV from needle sharing, I’m not so innocent. If I tell people I got HIV through unprotected sex, I’m not so innocent. In fact, considering I’m male, they presume I got HIV from another man (I did – but not all men do; statistics reported indicate 15-20% of HIV+ men in the USA likely contracted the virus from a female partner).

I’m unafraid to say I made some poor decisions along the way, and I know exactly when, where, and how I made the decision that led to me having HIV. The man with whom I made that decision isn’t part of my life anymore. Actually, he’s no longer of this world. This is both sad and a relief; he was a beautiful soul with a great deal of talent, but also tortured by family history and scarred by living as a gay man in the South. I have to believe he’s at rest now, and my life is better for his passage through it. If I learned anything from him, I learned how NOT to live with HIV – and I also learned that even deeply wounded people who have made poor choices deserve love, respect, and a chance at a better life.

We all make decisions and take risks in daily life. Where in our lives we take those risks directs how those risks affect us. If we fail to wear a seatbelt, we may suffer severe injury in a car accident. If we smoke or chew tobacco, we run the risk of cancers. If we overeat, we may become overweight and suffer cardiovascular disease or diabetes. If we invest our money in exotic financial instruments, we may run the risk of a great financial loss in an unstable market. If we text while we’re walking down the sidewalk, we run the risk of collision with another pedestrian or tripping on a crack in the pathway. I could list many examples, but that would belabor the point.

In each case, many influences push the decision we make in the moment. Not all are rational – some are substances, some are emotions, some are cultural norms, some are peer expectations, and so on. Sex is no different, subject to all those same factors. Even so, if the marriage equality debate is any indication, I can expect this line of questioning (and the reactions and comments that follow my answer) for the rest of my life. Sex – especially with someone of the same sex – is subject to some extra-special moralizing. I’m part of a very special "them". Apparently, we all need an "us" and a "them".

Not everyone takes this tack when they learn I have HIV (though the people who wipe their hands, having shaken mine, are mildly annoying). And HIV isn’t the only thing that gets treated this way. Frankly, I feel for folks who both smoke and have cancer – they frequently get little sympathy at all, because the assumption is that they smoked, so they "earned" it. No one deserves cancer, or HIV, or a head injury, or poverty, or any other unfortunate condition of living. (Okay, maybe gay Republicans deserve to be kinda lonely. Maybe. Apples and oranges?)

When it comes down to it, I’m just another person. So is the homeless guy on the corner. So is the archbishop. So is the president. So is the cat lady I once lived next door to (and sort of envied). Each has a different lived experience, and has made choices based on that. Whether or not I disagree with them on those choices, if they don’t directly affect me, I feel I should simply respect them and their choices. I wish people could accord me – and many people like me – that modicum of humanity. I suppose, if everyone were really capable of that, we wouldn’t have had Proposition 8. No one would care that I’ve married a man. I’d feel perfectly comfortable telling my family I have HIV (that won’t happen). And people wouldn’t slam a prospective Supreme Court justice for having said that her lived experience affects how she judges cases.

They’d just nod and say, "Of course. She’s a person." Just like me.

Read the original article at Daily Kos

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