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Fear, Not Loathing and HIV

By Aryeh Lebeau

December 1, 2011

As an action-packed year for the HIV/AIDS community draws to a close, TheBody.com takes stock of 2011 in a new series of articles, "2011 HIV/AIDS Year in Review." Read the entire series here.

As we wind down 2011 and look back at the year in HIV and everything we've published on TheBody.com, I want to reflect on what you haven't seen on our site. We take the liberty of screening article comments -- mostly to eliminate spam, but also to filter out an occasional hateful message or two. Here are a few lovely examples from this year:

"all u faggotz wit aids should die"

"I'm so tired of whining black faggot trash blaming the world for their closeted filth."

"This is one disease that can be eradicated quickly. Don't have homosexual sex. Period. End of disease. That simple. You get it, it is most likely your own fault."

We have an inherently HIV-focused audience, so fortunately these types of comments are few and far between. But go to any major general interest website like CNN.com and you'll see that the comments on any HIV-related story immediately devolve into lengthy arguments sparked by messages like these. I'm calling attention to these quotes, because even as horrific and sickening as they are, I believe there is something to be learned here.

Aryeh Lebeau

Aryeh Lebeau

These comments are indicative of the overwhelming stigma people with HIV and AIDS face every day. There are always going to be people who see HIV-positive individuals as an easy outlet for their homophobic, racist and sexist beliefs, but I think there's something deeper going on. There is an element of self-delusion and a need for reassurance on display, almost like these people need to repeat such things as mantras to convince themselves that this disease has absolutely nothing to do with them.

I have drawn insight from an obstacle I encountered in my own life. When I was 15, I was the victim of a random shooting in Manhattan. A bullet, fired during an altercation half a block away, missed its intended target and made an unfortunate collision with my right shoulder. My world was turned upside down in a flash.

Having worked at TheBody.com for 12 years now, I've often thought about how that moment of my life might be akin to someone finding out they've tested positive. I instantly thought I was going to die. I've heard so many stories of HIV-positive people who immediately questioned their own mortality.

Now of course, by no means am I equating my experience with the challenges so many face living day to day with HIV. My physical pain disappeared long ago, but someone living with HIV will continue to face physical hurdles indefinitely. And as raw as my emotions were back then, the memories continue to fade year after year and all I have left are the scars on my skin and that disfigured piece of metal pulled from my shoulder. People with HIV don't have the luxury of moving on.

As different as our experiences are, I still learned a valuable lesson.

When I was recovering from my wound before returning to high school, I was so nervous to go back and see everyone. I didn't want to be the center of attention. I didn't want to talk about it, but I knew all eyes would be on me when I walked into school. But I did expect people to be overly sympathetic and baby me. And there were certainly some who fell into that category and there were others who avoided me entirely because they didn't know what to say.

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But I was shocked by quite a few people who actually turned the incident on me. They would say things like "you're so unlucky" or "what were you doing there?" -- as though walking around the corner from my family's apartment on the Upper West Side at 6 p.m. was such a high-risk activity.

At the time, that type of comment was incredibly painful. Looking back now, I realize that their comments helped distance them from a situation that was terrifying and all too close to home.

This couldn't have happened to me because I wouldn't be so incredibly unlucky. I'm safe. There was a reason this happened to him and not to me.

I see the same fear in the repulsive comments submitted to our site and elsewhere. Behind the hatred and blame lie dread and denial. There's no doubt HIV is a frightening prospect. It's easier to create a fantasy than to face reality.

I'm not black or gay or Latino, so I'm safe. It's their fault. They brought it upon themselves.

I don't say this to excuse such comments. I only seek some understanding of how people can be so incredibly cruel -- and that's the tragedy of HIV.

The human aspects can be an even greater challenge than the health issues. Stigma, borne out of fear, prevents some people from getting the care and support they need, some others from getting tested in the first place, and remarkably even some doctors from testing their patients.

There's no doubt that even after 30 years of the epidemic, stigma still persists. But I'd like to believe that it's getting a little better day by day. Ongoing efforts toward routine HIV testing, the recent trend of acceptance campaigns for LGBT youth and improved media coverage of HIV, particularly around the 30th anniversary, are all contributing factors to this progress. And it's certainly encouraging to see a marked increase in the number of people who have conquered their own fears by disclosing and sharing their stories on websites like ours.

As this epidemic goes on and continues to impact people from all walks of life, I'm hopeful that fear will continue to lessen and compassion will shine through more often than not.

Aryeh Lebeau is the general manager for TheBody.com and TheBodyPRO.com.


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