Social situations relating to HIV are confusing, and not just to those who are free of the virus. When I first tested positive four years ago, finding mutually beneficial ways to comport myself and healthily interact with those not living with HIV was a murky and unknown topic that has taken me a long time to understand.
I’ve learned mostly through trial and error. But being on the receiving end of problematic statements and behaviors highlighted many boundaries that I hadn’t initially considered; society’s stigma taught me the etiquette that I prefer in negotiating interpersonal relationships with sero-negative people.
In previous installments of this series on HIV etiquette, we discussed how to react when one finds out their crush is HIV-positive and how to support a newly infected friend. These pieces are great for one-time (if extremely difficult) situations. But it’s also important that we talk about the best ways to discuss HIV with those who have it, or how better to relate to an HIV-positive person over the course of your association with them.
Just for context, this piece was inspired by a question posed to me by a good friend. He and I have a mutual acquaintance who is living with the virus, and the last time my friend saw this acquaintance he had noticed some changes in their body. They seemed bloated and had lost weight in the face. My friend was concerned... Is our acquaintance sick? He asked me, “Is it appropriate for me to comment and how do I express concern without coming off as offensive?”
In this and other situations where discussion of HIV comes up with sero-positive people, there are some great steps to remember.
1. Educate yourself. Again. Yes, I’ve said this in every piece thus far and it’s worth repeating. HIV education isn’t just for those living with the virus. Learn terminology (do you know what “serodivergent relationship” means?). Learn about possible side effects for HIV meds.
If my friend had done some reading, he would have learned that many drugs used to treat HIV cause something called “lipodystrophy.” Essentially, this means that sometimes a drug will cause deposits of fat to shift to new locations on the body.=
When you educate yourself about HIV, you don’t just increase your own knowledge of the virus. Knowing about HIV also communicates a level of interest in your friend’s health. It means you care enough about what they are experiencing it that you are prompted to learn more about it on your own.
Perhaps there is some facial wasting and increased belly fat in our acquaintance because of the drugs they are taking. Of course, we can’t possibly know this for sure without asking that person. Which brings us to...
2. Let HIV-positive people set the tone for discussions of their virus. My friend then asked me “Should I ask them about the changes in their body?” I answered with a resounding “NO!”
Lipodystrophy, and other consequences related to HIV and the meds used to treat them, can be a traumatic topic. Imagine you were undergoing the changes our acquaintance may be suffering — would you want people to point out something you may consider unsightly and embarrassing? I certainly wouldn’t, and I’m very open about HIV and how it impacts my life.
But that’s the thing; I choose the terms on which I discuss the virus. People around me feel comfortable asking questions about topics that I have broached: my meds, my overall health, how I approach dating someone who is without the virus. So when discussing HIV with someone living with the virus, it’s important to let them take the lead.
This requires some sensitivity, patience and listening, but it’s not a stretch to say that this is probably the more important point to make when discussing topics like this.
3. Make them feel human — not like a disease vector. This is perhaps the most difficult part when specifically discussing an individual’s health and relationship with their virus. Really, many of the tips I could give you regarding this boil down to the necessity of humanizing the virus and those who have it.
If you’re HIV-positive and on dating sites, this becomes a huge problem. When negotiating a possible date or hookup, invariably I get asked “Are you undetectable?” The subtext, of course, is that since I am undetectable it will be unlikely that I can actually transmit the virus. This question has several disturbing implications (If I say yes, will they propose going without safer sex practices?). The most offensive is the assumption that they have the right to that information. Is it anyone’s business but mine what my labs say?
Also, when you essentialize the virus to questions like that, you reduce HIV-positive people to a carrier of contagion. While some folks are not offended by this question, many are. You are changing them subtly from a person who lives with a disease to a source of contagion. Is this really how we should treat people who face stigma regarding their virus every day of their lives?
4. When in doubt, discuss it with someone else first. While it’s not always possible to do so, my friend had the right idea. Instead of reaching out to our acquaintance in a way that might be traumatic or embarrassing, he came to me.
I had little personally at stake in the situation, so I could give some solid, unemotional advice from the perspective of someone living with HIV. Hopefully you know someone else who is open about being HIV-positive to bounce your question off of.
So if that is an option for you, take it. If not, reach out to a local HIV/AIDS advocacy organization to get some insight. Ask a medical professional. Ask anyone — as long as they have a good grasp of issues surrounding HIV.
In the end, the most important thing to remember in this situation and others similar to it is to keep the humanity of your friend (or even a stranger) in mind.
We live with the virus, yes. But we are more than just the virus and we deserve to be treated that way. And it’s not hard to do — just be prepared beforehand with thoughtful analysis, an open mind, and a willingness to care.
Ian Awesome is a disreputable Occupy organizer and general rabble-rouser living with HIV in the Pacific Northwest. A former anti-DADT activist and current radical ne’er-do-well, he can usually be found publishing his ire at OneAngryQueer. He originally published this HIV-etiquette series on Gay.net as a way to help HIV-negative people better understand HIV health and sexual issues.