Tuesday, December 09, 2008

Stigma one of the worst 'symptoms' of HIV

It’s a rainy Tuesday, and the group of women who put on this year’s Viral Monologues are debriefing over bowls of moose-meat stew about their performance the previous weekend.
There were some challenging moments. One of the six performers backed out at the last minute, unable to bear the thought of putting her HIV status out there for all the world to see. That left an empty chair on stage.
But the group decided to leave the chair there anyway, as a reminder of the stigma that still lingers when it comes to HIV. The effect was powerful.
The Viral Monologues models itself after Eve Ensler’s popular Vagina Monologues. The “viral” version of the play was launched in 2002 by the Voice Collective, the AIDS Vancouver Island women’s group who is meeting on this day to dissect its sixth and most recent production.
The “monologue” premise a la Ensler is simple enough: Women sit on stage and tell personal stories from their lives - from the point of view of their vaginas in Ensler’s case, or through the lens of HIV in the case of the Viral Monologues.
Ensler’s stories are real-life, but presented by actors. What distinguishes the Viral Monologues is that the stories are told by the women who are actually living them. Today at the debrief, talk turns to how challenging that can be.
Revealing the intimate details of your life to an audience of strangers would be difficult at the best of times. But when the story is about HIV, anything can happen. One member of the Voice Collective is learning that the hard way, having been ordered out of Canada after years of living here with her Canadian husband when word got out that she was HIV-positive.
A shift on AVI’s information line is a painful reminder of the stigma that continues to cling to HIV, says AVI manager Heidi Exner.
“I’ve had people ask me whether they should bleach their dishes now that they’ve found out their friend has HIV,” she says. “It’s not the people with HIV who change. We change the people.”
Media attention is a mixed blessing, the women agree. The stories need to get out there, because they put a face on HIV. Those who still envision HIV as the quick and brutish killer it once was need to meet the new generation of people who are living into old age with the virus due to major advances in treatment.
But the risk to those who go public shouldn’t be underestimated, because there’s just no predicting what might happen once the story of you and your HIV hits the daily paper. Even when things go as well as they possibly could, there’s a potential for something to go very wrong when it comes to a disease as stigmatized as HIV.
An uninformed and fearful landlord could see your name in the paper, for instance, and start working on ways to evict you. A potential employer could see the story and choose somebody else for the job. The guy at your bank, or your kid’s teacher, might start looking at you funny. The pity in people’s eyes might drive you mad.
Once you and your disease are featured in the media, you’re “out” wherever you go. There’s no taking your privacy back.
If it’s a story about living with asthma or cancer, no problem. Nobody gets judged for having asthma or cancer, or a whole roster of other diseases. But the same can’t be said for HIV.
Even the way a person gets HIV determines whether they’ll be more or less stigmatized . There’s one kind of stigma for those who catch HIV through a blood transfusion, and quite another for those infected through injection drug use. As for sex, better to have contracted HIV through your unfaithful spouse than to have gotten it through a promiscuous lifestyle.
Exner tells a funny/tragic story of a hospital doctor relentlessly questioning her one time about the source of a friend’s HIV, as if her answer would make all the difference as to how the patient was treated. The sad thing is, it might have.
With new medications turning HIV into a chronic health condition rather than a death sentence, it’s stigma that often gives the disease its sharpest edge these days. The women around the table agree it’s tough to go public with your story in the face of such judgment, but recognize that staying silent just feeds the sense of shame.
“It’s part of our life,” says one. “We’ve grown a lot by telling our stories.”

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