There’s now a home test for finding out your HIV-status, and Shadley Grei hopes you never use it.
Just because we can, doesn’t mean we should.
I had my first HIV test in 1995. The first man I had truly loved had died from AIDS-related causes. I had known he was affected when we started dating, and we were exceedingly cautious through what would turn out to be short-lived romance. At that time, the disease was still very much considered a death sentence and the stigma attached to it was enormous. I was living in NYC when I had the test done which came first with a nerve-wracking, detailed 20-minute counseling session about risky behavior, fears and questions. I had to wait seven days to get the results.
The week before my return appointment was a blur of nightmares, depression, anxiety and life contemplation. It was one of the most emotionally complicated and challenging few days of my life. When I returned to the clinic and met with the same kind therapist, I literally burst into tears when she told me I was negative. Actually, the term she used regarding my test was “non-reactive” so there was an excruciatingly long pause between her saying it and clarifying what it meant when my wide, terrified eyes made my confusion clear. I asked her for a hug and when she wrapped her arms around me, it was one of the most poignant moments of my life.
Fast forward to today where the medical advances have minimized the death-sentence stigma and made test results so instantaneous that there are now home HIV tests.
I will never take one. And I hope you don’t either.
The argument has been made that perhaps more people will get tested if they can do so in the privacy of their own home. According to the U.S. Food and Drug Administration, “FDA predicts that the availability of the OraQuick In-Home HIV test will contribute measurably to public health by helping more infected individuals to become aware of their HIV status and thereby reducing HIV transmission.”
I believe that creating an opportunity for someone to receive this information without anyone else around to hug them regardless of the results has the potential to create more harm than good.
The information age has connected us in monumental ways that simultaneously have disconnected us from each other. We can have a video phone conversation with someone on the other side of the world but many times we do so at the detriment of talking or touching the person sitting right next to us. We use social media as a distraction from loneliness. It’s hard to feel alone when your smart phone is constantly telling you that somebody somewhere “likes” you.
But the reality of crushing loneliness will make itself brutally clear in the moment you need someone else the most if that home HIV test comes back positive. There are times when we may update our status to say we’re having a bad day and revel in the warmth of shared puppies and rainbows and virtual hugs that come our way but when the news is this big, this devastating and this life-changing, aren’t we more likely to keep it hidden? The stigma of HIV might be reduced, but it’s certainly not gone. And the psychological weight of trying to process exactly what this means is not something anyone should be expected to make sense of on their own.
Let’s face it, people get freaked out enough by self-diagnosing symptoms with an internet search. How many times a day does someone become convinced they’ve got some form of cancer only to visit a doctor who explains that this cancer is, in fact, a sinus infection or has some other easily treatable, non-life-threatening explanation? But what if the corner drug store started carrying home cancer tests next to the pregnancy tests? Self-diagnosis based on a few loose details without any concrete evidence becomes harder to doubt after you pee on a stick that tells you that your gut instinct is correct.
The thing about home pregnancy tests—and even this hypothetical home cancer test—is that these results definitely affect other people but they don’t literally put other people at risk like HIV does. You cannot contract pregnancy or cancer. HIV is more manageable these days but it’s not curable and it is passed from one partner to another. Isn’t it possible that the confusion, anger and despair that can accompany such staggering news can lead to even more high-risk behavior because no one has offered the comfort and tools necessary to know how to process this information? Even with all the precautions taken to keep partners safe, what about the potential for self-harm through substance abuse or increased depression that can lead to suicidal thoughts or actions? And the grief, loneliness and shame that can accompany a positive status may make seeking proper medical assistance feel impossible.
Receiving HIV-status results is a very emotional experience even when, like me, the results are the best kind of negative news. Yes, the testing of HIV need to be convenient but, more importantly, it needs to be kind.
And there is no kindness in leaving someone to face their fears alone.
—Photo Naomi Chung’s Daydream Art/Flickr
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