In my personal and professional life as a sex educator, I’ve talked to a lot of people about HIV testing. With those that refuse to test, I have the following conversation all too frequently:
“Have you thought about getting tested for HIV?”
“No! I mean, what if I have it?”
When I first started out, I didn’t understand it. Looking back, I can see where newbie me had it wrong: when people ask, “what if I have it?” they’re not just asking for a clinical account of their treatment trajectory or their life expectancy. Rather, they want to know how to deal with everything that goes along with being labeled a “person living with HIV (PLWHA).”
As the gut-wrenching panic of the early AIDS crisis fades into distant memory, more and more people can expect to live long lives with HIV. Unfortunately, that also means living with the stigma of being “HIV positive.” HIV-related stigma isn’t a mere inconvenience, it is a persistent obstacle to progress in the HIV epidemic. It results in new infections, keeps people from accessing treatment, and it makes people sicker.
Here are five of the more common stigmatizing beliefs about HIV that I hear on a daily basis. Have you caught yourself or someone you know sharing them?
1. “They just can’t control their sexual urges.”
The idea that HIV risk is primarily a result of lack of control over sexual urges and poor decision-making abilities is a common oversimplification and misconception about HIV risk. First and foremost, let’s remember that not all HIV is sexually transmitted. You can be exposed to HIV by sharing needles and other injection equipment; through blood transfusions; or as a fetus/infant during pregnancy, delivery, and breastfeeding.
In reality, HIV risk is driven more by sexual networks – that is, the larger picture of people’s sexual activity that takes into account both past and current partners, as well as their partners’ partners — and the type of sex people have than by their own individual risk-taking behaviors. Think of a sexual network as being made up of the following people:
- People you’ve had sex with
- People your partners have had sex with
- People you’re likely to have sex with
This not to say that people shouldn’t feel empowered to protect themselves – they absolutely should – there are just other factors that come into play beyond any single person.
If there lots of people in a sexual network are living with HIV, the risk from a broken/absent condom is much higher. The prevalence of HIV in a sexual network or community is often driven more by structural factors (mass incarceration, low access to testing and treatment, availability of condoms, cultural norms around condom use, criminalized existences, prevalence of sexual or gender-based violence, etc) than by individual choices. Sexual practices also make a difference. Certain sex acts carry more risk of transmission than others — being the receptive partner for vaginal and especially anal sex is riskier than being the insertive partner for a number of reasons. That’s part of the reason why women as well as men who have sex with men (MSM) experience high burdens of HIV. Consistent condom use also complicates the picture. I could have sex with a different person every week, but if I correctly use condoms every time, my risk is likely lower than someone who has fewer sexual partners but never uses condoms.
Finally, not everyone has a choice as to whether or not they have sex and/or use protection. Whether it’s sexual assault, sex work, human trafficking, or just the expectation that a person have sex whenever their partner wants, sexual decision-making often falls outside of people’s control.
2. “They brought it on themselves.”
For some groups disproportionately at risk for HIV, exposure to HIV comes by way of highly taboo behaviors — engaging in sex work, being gay or otherwise a man who has sex with men, or being an injection drug user. Seeing HIV as a punishment for these behaviors not only serves to dehumanize vulnerable groups, but also increases the stigma faced by all groups affected by HIV.
3. “Who would have sex with someone who’s living with HIV?”
In short, plenty of people, because living with HIV doesn’t make you unworthy of sex or love. Frequently, people express disgust at the idea of having sex with someone who has HIV, as if they are somehow going to spout poisoned darts from their genitals. The reality is that people who adhere to their medications and achieve viral suppression (definition) are highly unlikely to pass HIV on to their partners — even if they don’t use condoms.
4. “If I got diagnosed with HIV, I would kill myself.”
Life can be worth living even with long-term illnesses. We don’t tell people that they should kill themselves if they are diagnosed with cancer. So why would we say such things to people with HIV? For people with cancer, we try to use the best science and medicine available to both prolong and improve the quality of their lives. All human beings deserve this kind of care when they become sick, no matter what the illness is.
And, when considering the facts, there is actually a great deal of hope for people who are living with HIV that there did not used to be. People who get diagnosed early and regularly take their medications as prescribed have lives in the typical lifespan range and can be happy, healthy, and loved. Saying things like this obscures that reality from people who actually do go on to be diagnosed with HIV, depriving them of the realistic hope of the relatively healthy life available to them through modern medicine. Hopelessness, in turn, is highly associated with suicide risk.
5. “I would feel badly for them, but…”
This is really just a different version of number 2, but I hear it so often that it deserves its own section. This doesn’t just imply, it outright states, that people who are suffering from the medical and social effects of living with HIV do not deserve the same care and compassion that we give to all people who are suffering. No matter what words follow the “but,” it makes it sound like having HIV is a crime that a person committed, rather than an illness that they are struggling to cope with. Even if you believe someone has purposefully become infected with HIV in order to receive HIV/AIDS-specific social services, he or she should not be the target of your shaming. Instead, shame a system that coerces people into a life changing illness in order to receive basic services like food, healthcare, and shelter.
“The time to act is now.”
The U.S. Federal theme for World AIDS Day is surely meant to act as a clarion call to policy makers to act now in the face of dwindling HIV funds and on the precipice of some really exciting advances in prevention and treatment. This week, we might see national or multi-national organizations publicly announce their renewed commitments to HIV funding amidst a veritable deluge of red AIDS ribbons. Local HIV organizations will use this as a rallying cry to boost their year-end fundraising campaigns. Everyone who donates money will feel good about themselves for a few days and then promptly forget about HIV in favor of ABC Family’s 25 Days of Christmas and more pressing domestic and foreign policy concerns.
All of this is wonderful, we should certainly continue doing it. However, these actions ignore the reality that one of the biggest impediments to “acting now” isn’t something that can be quickly addressed in the flurry of World AIDS Day. We can start today, but eliminating HIV-related stigma is something people have to work at on for the long haul. It means actively making the choice to lift people up rather than punching them down, extending empathy rather than judgment, and nixing these stigmatizing phrases from your vocabulary. Over time, though, these dedicated efforts can ensure that more people living with HIV get the opportunity to live long, healthy lives — free from stigma and discrimination.
*Special thanks to Barbie for her contributions to this piece! Now go read everything she’s written because she’s wonderful.*