One in seven people with HIV don’t know they have it. Although the Western North Carolina AIDS Project proudly provides free, rapid HIV tests every day of the year, tomorrow is a special day for us: it’s National HIV Testing Day.
An estimated 62% of adults in the United States have never been tested for HIV, but it’s quick and easy, and it’s the first real step towards self-empowerment.
We also know, as people who have all sat opposite an HIV tester at some point in our lives, how big and scary those three little letters can feel. So let’s break down the stigma around HIV testing. What better way, we thought, than by sitting down with one of our favorite prevention specialists at WNCAP to find out from her, what does your HIV tester want you to know?
Tracey was more than happy to share:
7 Things Your HIV Tester Wants You To Know
- Not every doctor is going to be an HIV expert.
When you go to the doctor’s office or a local health clinic, they may not have the time or specialized knowledge to make sure your needs are being met. Or that you understand your real risk factors. WNCAP Prevention Supervisor Tracey has sat across from her fair share of people at the testing table. And in many of those interactions, she has heard stories of neglected opportunities to discuss HIV in medical settings. “The primary physician may not feel comfortable providing that information, offering an HIV test, or even sharing the diagnosis. This is a real issue: there are doctors who still don’t quite understand the best way to start talking about HIV with people.”
The average medical student receives about eight hours of sexual health training. And only the top medical schools will teach the subtle nuances of LGBTQ and other minority groups’ sexual health issues. That’s where organizations like WNCAP and Planned Parenthood can save lives. Not only are we trained to answer your questions about your sexual health, but we’re trained to ask you about it. This is something not all primary caregivers are trained for.
2. In small towns, it’s hard to stay anonymous.
Although WNCAP serves western North Carolina (it’s in our name!), we see out-of-state visitors all the time. Stigma around HIV, even in situations as innocuous as asking about HIV testing, carries big danger for people in small towns. “We’ve had people drive hours just to avoid the accusing stares. It’s terrible.” Tracey recalls one woman’s experience of simply walking into a waiting room on an HIV testing day, only to be met with wagging fingers and assumptions. “People will go far out of their way for the judgement-free environment we provide at WNCAP. That’s one major advantage to specialized ASOs [AIDS Service Organizations] in regions of the country with little access to large medical centers.”
We don’t discriminate. Unfortunately, neither does HIV.
3. There is a big difference between HIV and AIDS.
HIV is different from AIDS.
HIV is different from AIDS.
HIV is different from AIDS.
HIV is different from AIDS.
Okay, now that we’ve got that out of the way: “You cannot transmit AIDS,” Tracey explains. “We can transmit human immunodeficiency virus when we are the recipient of any of the five body fluids that actively carry the virus in a high enough level. Those are blood, semen (including pre-seminal fluid, or pre-cum), rectal fluids, vaginal fluids, and breast milk.”
“People are not exposed to HIV and then the next week, the next month, they have AIDS. That’s not how it works. The primary symptoms are like the flu. And then after that, you may not show any symptoms for HIV for ten years. It really just depends on your body.
“AIDS, or acquired immune deficiency syndrome, is whenever a certain number of those CD4 cells are compromised (an individual’s CD4 count needs to be below 200, to be exact), and you have one or more opportunistic infections.” In other words, HIV is a virus, and AIDS is a syndrome that can develop if the virus progresses and the body is hit with additional infections. “For example, you may have been exposed to the cold virus, but the cold virus cannot be fought in your body because those CD4 cells–which help your immune system–are compromised. So they can’t help you fight off the cold and it turns into, say, pneumonia.”
Stigma around HIV carries big danger for people in small towns.
So we know that HIV doesn’t always progress into AIDS. One variable is your own individual body. The other variable is whether you begin taking medication, and how quickly that happens.
“The importance of the medicine is that, even if somebody’s body has been compromised to the point of AIDS, or if it’s in the very initial stages of diagnosis of HIV, the medicines kill all of these different parts of the virus. It’s amazing, the advances they’ve made in medicine.
So if somebody does get tested regularly, they learn their status really early, then the virus does not have the chance to not only multiply, but compromise those special CD4 cells. And the sooner that they start on the medicine and they are diagnosed, and they’re in care, the greater the odds they may maintain what’s called “undetectable” and actually untransmittable viral loads.”
Everyone has a status, you can be HIV positive or HIV negative. A positive is not a death sentence. “People who are diagnosed with HIV are not automatically going to die of AIDS. They may not ever have AIDS. So what do we do? We make sure to test everybody as often as possible. At least once a year. That way we can make sure and get people the medicines and the care that they need so they can also help take care of their partners and their community.” Setting up an appointment for your annual HIV test is quick and easy, and places like WNCAP will provide the test and results at no cost!
4. You’re nervous, and we feel it.
When asked if she ever gets nervous during testing, Tracey nods emphatically. “If you don’t feel people’s sensitivity and vulnerability, then you’re not in this role for the right reasons,” she says. “If you need condoms, or if you just need a hug, we’re here.” Whether you’re testing for the first time, or you’re getting pricked for the twentieth time, there’s always an understandable level of anxiety. And for testers themselves, they wish well for you. We’re empaths, we can’t help it!
5. That 20 minute wait can feel like forever, but we like talking to you.
There was a time it took weeks for an anonymous lab technician to call you with your HIV test results. Now, with rapid HIV and Hepatitis C testing, the wait can take less than half an hour. Still, when you’re sitting across from your HIV tester, every minute can feel like a lifetime. But in Tracey’s experience, that’s the time some people really begin to open up. “When there’s that 20 minute lull between testing, that’s when those moments of engagement really come out.” Unlike medical offices where you may be called days later with results, you have a trained and empathetic prevention counselor sitting across the table from you. That’s a real resource. “If people want to talk about their possible exposures, then that’s what we’re there for.” When people come into the WNCAP office, our prevention team can offer them condoms or syringe exchange supplies. “We make sure that their basic needs are met while they’re here. And that they have access to different kinds of information.” We know how hard it is to make that call to set up an appointment, or how many times you may want to turn around the car on the drive over. We’re already impressed by your tenacity and interest in your health by the time you sit down with us.
“Sometimes it’s really cool to just talk about what’s going on in the world today. Seriously! I learn so much a lot of times, just sitting there and talking with people about what they see and what they experience. It’s amazing what we can talk about in 20 minutes.”
6. Don’t assume your status just because of stereotypes.
“The first basic requirement of HIV transmission, as the name states, is that you are human.” What HIV is and isn’t gets confused because of stigma and lack of education. “So when we’re testing, we don’t say, because someone is gay, they’re going to be more likely to have the virus; because they’re black, because they’re transgender–it’s not the case. We try to go into our testing sessions and provide everybody with the information they need to keep every body safe.” Stigma isn’t just something we project onto issues and people; with enough time, we begin to internalize that stigma, and that’s where the danger lies with fake facts.
It’s just as important to remember, HIV doesn’t discriminate. Of people who may not fit the stereotype of an HIV positive person, Tracey warns, “don’t build up expectations or assumptions. It could be a female that tests positive; or a male that identifies as heterosexual, with no stated history of drug use. We don’t stigmatize, we don’t put labels on people.” And neither does HIV.
7. Oftentimes, we learn from you.
“It always amazes me how incredible the conversations are. And how much I grow from these conversations and the engagement from the people that come in. It’s amazing.
“It’s always really interesting to learn what the reason for testing is. People come in because it’s their birthday and they always get tested once a year; that’s the one day they take to really cherish and respect their bodies. Sometimes they are entering a new relationship and they want to respect their partner.
“Or maybe they have risk behavior, and they are so scared because we have this image drilled into our minds about what HIV looks like. It’s, you know, “the worst scenario.” It’s not like that anymore.” Setting up that appointment is the first real step to self-empowerment. And as you sit and wait with someone like Tracey, just know that we’re really there with you. We love your questions, so ask away!
You can catch Tracey and our prevention specialists tomorrow at Firestorm Books & Coffee in west Asheville from 1:30pm-4:00pm. RSVP today!