Louis Catania, Patient Navigator, Division of Infectious Disease and medically reviewed by Ann Avery, Infectious Disease Physician at Metrohealth Medical Center
Holidays, weddings, you name it – something about a large family gathering can make things more stressful than normal. Constant questions about your personal life, job, eating habits, and body often pop up and don’t make the day any easier. 😨
Nothing’s off the table – politics, religion, and, of course, someone’s HIV status. It’s the last one we want to focus on, because all too often we hear about people being asked nosy, often hurtful questions that could’ve been avoided. 🤔
Yes, stigma is stupid
We want to quickly say that we know it shouldn’t be your responsibility to manage other people’s ignorance or hate. 🫂
Stigma is an unfortunate part of our culture. It truly hurts so many people. Unfortunately, many of the old myths about HIV persist, clouding people’s reactions. 🤦 Today, HIV is manageable with safe, effective medications. As long as you’re taking meds, you’ll live a healthy, ordinary (or even extraordinary) life!
You should not have to correct or educate these people; they should do it themselves. But that’s not the world we live in yet. 😥 Instead, we still have…
The classic ignorant questions
Everyone has been asked a question that has hurt them at some point. Not everyone is trying to cause harm, but the questions still suck. For people with HIV, these questions can hit even harder.
Read on for ideas on how to handle the common—and often, senseless-- questions. ⬇️
“Are you clean?”
- It's offensive: “Clean” implies having HIV is dirty, which is downright wrong, and obviously, not kind. Clean and dirty are for your laundry.
- Why people say it: This question stems from the popular phrase "a clean bill of health." An actual “bill of health” refers to a document that, historically, certified that ships sailing from place to place didn’t have any transmissible diseases on board. It's now part of our everyday vocabulary, and we say it without thinking about its origin: it’s an outdated term.
- How you might choose to respond: "I believe you are referring to my health, right? My last health screening shows that I am (doing well, very healthy, undetectable, etc.)"
“I’m not going to get it, am I?
- It’s ignorant: And people are probably asking because they don’t know and they’re scared and maybe even thinking selfishly. People do not get HIV by hugging, shaking hands, sharing toilets, sharing dishes, or kissing someone who has HIV.
- Why people say it: It’s that lack of education and awareness, combined with outdated beliefs.
- How you might choose to respond: “I’m not sure if you know, but you cannot get HIV by hugging, shaking hands, or kissing. HIV can’t survive outside the body.”
“Who gave you HIV?”
- It’s hurtful: Asking a personal question like this to someone living with HIV can often bring back a painful memory.
- Why people say it: Often, people do not realize what they are asking is not OK. With this one, they might be truly unaware it’s an inappropriate question.
- How you might choose to respond: “I don’t feel comfortable sharing all the details with you.” Or “Wow, that’s none of your business.”
“Does your partner have HIV?”
- It’s prying: Nobody should ask a personal question like this about someone’s partner. People are naturally curious, and there’s a time and a place, but not for this question.
- Why people say it: They might not recognize where their interests end, and privacy begins. They don’t see the harm in indulging in their curiosity.
- How you might choose to respond: “That’s not your business” is the real answer here. You can point them in the right direction by simply not responding altogether, or redirecting the conversation, as in “let’s talk about something else.” These are all totally valid options.
At the end of the day, you get to respond to these questions in the way that makes you feel the most comfortable. Sometimes, the things people ask might be way more unexpected or inappropriate than you’d imagine.
The most important thing is to try to stay empathetic. 🤗 Try not to make assumptions—because, in all honesty, people usually don’t have bad intentions; they just don’t know the big picture. Often, these questions come from the lack of public awareness and the stigma surrounding HIV. This doesn’t mean that you can’t, or shouldn’t, correct the way that others say things. Rather, think of it as part of a larger issue: our society doesn’t know enough about the facts surrounding HIV.
There are lots of people out there who are open to learning. Remember, you aren’t responsible for their viewpoints or abilities to pick up on the facts. Teaching people things is exhausting, and you don’t have to spend your energy on it if you don’t want to! Try directing people towards resources.
- 🧑🔬 Check out the facts: Counter unfamiliarity with information. The CDC’s HIV stigma fact sheet is a great place to start.
- 👨❤️👨 Sharing our stories: Our Tales of Triumph series was made to share the stories of real people whose lives have been touched by HIV. It’s a great place to learn more about what it’s really like to live with HIV and why everyone deserves empathy.
- 📚 Learn more: Send them to resources like the Positive Peers blog to help them understand the reality of living with HIV.
You can also help people understand what the correct response is. If you ask us, the best thing anyone can do when someone shares their HIV story is just to listen. Questions can be asked, but they should be carefully considered first. Think before you speak and all that. Sometimes, telling someone that they should listen can help, too.
Taking care of ourselves
Through all of this, the most important thing is your own mental well-being. 💗
At Positive Peers, we believe that life should be more than just living. We want everyone to have a positive, enjoyable experience. That means taking care of our Body 💪🏾 , Mind 🧠, and Spirit 👨❤️👨 through activities like exercise, eating well, and meditating. If you want to learn more about how you can best do that, check out our full blog here!
If you want to learn more about HIV or stay up to date on your health, check out the Positive Peers app! It’s a great way to make sure you’re educated on the latest developments in HIV treatment or to ensure you stay on top of your wellness goals. For those living with HIV, it’s also an easy way to connect with others for advice or just someone to lend an ear. We’re all in this together, after all.