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The Washington Blade

I am not HIV: Don't reduce me to a diagnosis; I am far more than a blood test result.


Washington Blade - October 17, 2008

FROM THE EARLIEST years of the HIV-AIDS pandemic, the language used to describe people who have the virus has been extremely important.

As people live a normal lifespan and eventually die from causes other than AIDS, it is time to reconsider the outdated labels we attach to them, which do more harm than good.

Early on, people typically learned they were infected only when they got sick. Activists insisted they be called "people with AIDS" rather than "AIDS victims" to make clear that they were not powerless victims.

This made sense before effective treatment became available in the mid-1990s, when being HIV-positive affected every aspect of a life and meant eventual certain death from AIDS.

Once it became clear that combinations of medications could effectively control HIV infection, we said people were "living with HIV" as fewer died from AIDS. Now professional caregivers, government bureaucrats and donor organizations that fund HIV-AIDS services call them "people living with HIV," PLHA or PLWHA for short.

This was an improvement, but they were still defined by the results of a blood test. Their names, their life stories, everything about them was subsumed in a diagnosis.

Even among those with the virus, the less articulate often abbreviated their HIV-positive test result - usually referred to as their "status" - by saying, simply, "I'm HIV." Well, I am not HIV.

Call me the next generation of PLHA. Why not just call me by my name? I have brown eyes I inherited from both my parents. I have my mother's dimples. I have my father's forehead.

And I have HIV.

My mother has diabetes. My father had (and died from) cancer.

Mom would be the first to say, "I have diabetes." Dad of course said he had cancer.

But it would never cross their mind - or anyone else's, for that matter - to say, "I am diabetes" or "I am cancer." In fact we would puzzle, even shudder, at the thought of subsuming all a person is into her or his diabetes or cancer diagnosis.

So why do we do it with HIV? Here's why: So those who don't have the virus can feel safe. So they can see those of us with the virus as "other" than themselves.

It seems one of human nature's least noble qualities that makes us need to believe we are different from or better than someone else for some reason or other. Sometimes it's based on skin color. Other times it's based on weight. Or religion. Or socioeconomic status.

In fact, there's no limit to the possible reasons for drawing lines between ourselves, the enlightened, and others, the ignorant, the smart and the stupid, those who make "good" choices and those who don't.

I thought that way during all the years I tested negative while my friends got infected and died. I thought I was smarter, made good choices, maybe even had a genetic reason for not getting infected. After all, I had done the same things as my friends and yet I didn't get infected. Didn't that "mean" something? But then my doctor in 2005 told me, "I have bad news on the HIV test." And it turned my world upside down.

Suddenly I was one of "them," one of the people I thought was somehow different from me, not as smart as I'd thought.

I was humbled to realize I was no different, no smarter, no more resistant to the same microbial menace that had terrorized so many millions before me.

HIV is something I have - just as I "have" opportunities throughout the day, every day, to choose a life of joy or to surrender to despair.

HIV is not who I am. Which is why I reject the label of "person with HIV" or even the ostensibly more affirming "person living with HIV." Pick your label, but they all reduce me to a diagnosis. And I am far more than the result of a blood test.

This is why it is time for people who have HIV to reject the patronizing need of those who consider themselves (some actually use the word) "clean" - who imply that we are therefore "unclean" and, let's be clear, unfit for human contact, love and sexual intimacy.

It is time to define ourselves in our own terms, not in terms of a diagnosis. It is time to say HIV is something I have, not who I am. It is time to reclaim our names.

My name is John.

*** MORE INFO John-Manuel Andriote is the author of �Victory Deferred: How AIDS Changed Gay Life in America.' He can be reached via this publication.


Copyright © 2008 -The Washington Blade, Publisher. All rights reserved to Washington Blade. Reproduction of this article (other than one copy for personal reference) must be cleared through the Washington Blade.

Information in this article was accurate in October 17, 2008. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.