Asking the wrong question or saying the wrong thing can make a conversation awkward and uncomfortable, especially if it’s about someone’s personal health.
Over the past five years of living openly with HIV, I’ve had many conversations about my journey with friends, family, and acquaintances. And through those conversations, I’ve gained insight into what the least helpful things are to say to someone who is HIV-positive.
Before you say one of the following statements or questions to someone who has HIV, please take a moment to consider what impact it might have on the person you’re speaking to. You’re probably better off leaving these words unspoken.
When you ask me if I'm "clean" in reference to my HIV status, you are being dirty. Sure, it’s just a phrase that saves you a couple of seconds saying (or typing) some extra words, but for some of us living with HIV, it’s offensive. It can also negatively affect our confidence, whether that was your intention or not.
As the Stigma Project puts it, “clean” and "dirty” are for your laundry, not for describing your HIV status. A better way to ask about someone's HIV status is simply to ask when they had their last HIV screening and what the result was.
Asking questions about HIV and being curious about the day-to-day of living with a chronic condition are completely understandable. However, how I was exposed to HIV is not really something you have a right to know. There are many potential reasons why someone might have an HIV diagnosis, including exposure through sex, mother-to-child transmission, sharing needles with an infected person, blood transfusions, and more. If those of us living with the virus wanted you to know our personal details and the method of our transmission, we’d initiate the conversation ourselves.
The best way to demonstrate a lack of social couth is to ask someone living with HIV if they know who exposed them to the virus. Asking such a personal question can elicit painful emotions. Perhaps their exposure is linked to a traumatic event, like sexual assault. Maybe they are embarrassed about it. Or maybe they just don’t know. Ultimately, it doesn't matter if I know who exposed me to HIV, so stop asking me.
Catching the common cold, flu, or the stomach bug is not fun, and sometimes even allergies can slow us down. During these episodes, we all feel sickly and may even need to take a sick day to get better. But even though I have a chronic condition, I am neither someone you should consider sick, nor am I suffering. People living with HIV who regularly attend appointments with their doctors and who take antiretroviral drugs to control the virus have near normal life expectancies.
Saying "I'm sorry" after hearing about someone's HIV diagnosis might seem supportive, but to many of us, it’s not. Often, it implies that we have done something wrong, and the words are potentially shaming. After someone shares the personal details of their journey with HIV, it’s not helpful to hear the phrase "I'm sorry." Instead, offer gratitude to the person for trusting you with that private health information and ask if you can help in any way.
It is best not to assume or even question if the current partner of someone living with HIV is also positive. First of all, when someone living with HIV has a sustained, durably suppressed viral load (called an undetectable viral load) for six months, there is no virus in their system, and there hasn't been for several months. That means your chance of acquiring HIV from that person is zero. (You might find this interview with Dr. Carl Dieffenbach from the National Institutes of Health helpful.) Therefore, relationships can exist without risk of transmitting HIV.
Beyond the science, it’s simply inappropriate to ask about my partner's HIV status. Do not allow your curiosity to make you lose sight of someone’s right to privacy.
What to do instead
When someone shares their story of living with HIV with you, the best way to respond is simply by listening. If you want to offer encouragement and support or to ask a question, think about how what you say might affect them. Consider how the words you use will come across, and ask yourself whether it’s your business to say anything at all.