Whether it’s the apps on your phone, the wardrobe in your closet, or the language you use, everything needs to be upgraded from time to time. The more comfortable we get with certain words and phrases, the more we risk losing the potential for new ones that more accurately reflect what we mean. This has never been truer than when it comes to the phrase: “HIV is no longer a death sentence.”
As an HIV activist, I hear the phrase echoed almost daily. While it is most definitely true, it falls incredibly short in describing how far we have come with HIV treatment. And frankly, it does an injustice to those living with HIV.
My husband and I, both living with HIV, recently started the process to adopt a child. (Gulp!) We were referred to an adoption agency, which another same-sex couple recommended, and were ecstatic to have an initial conversation with the adoption coordinator. It was a local agency that works with other LGBTQ couples, so we were confident about choosing it to represent us. Unfortunately, it didn’t quite go the way we had hoped.
We were off to a great start at first. My husband and I are great candidates, and the agency was prepping us for the next step. We wanted to be upfront about our status in case there were any questions we could clear up ahead of time, as a medical examination is part of the process. Being healthy and fit, we foresaw no issues arising from the pending medical evaluations. All the same, we came out to the coordinator about living with HIV. Then came the pregnant pause (pun intended).
“Well, I know HIV is no longer a death sentence,” she finally said.
As someone who is used to navigating people’s limited knowledge, I knew then our journey with this agency had come to an end. After taking a day to determine how they were going to handle our HIV status, they determined they would require us to list our status in our adoption profile.
For those who might not know much about adoption, this information should only go in the home study—if at all.
As part of the process, your doctor must sign off on your ability to parent the child through adulthood. Even though there are multiple chronic illnesses many adoptive parents might have, HIV was the one they required to be listed. Since they believed this would deter birth mothers from choosing us, the agency offered us provisional acceptance so we wouldn’t “waste our money,” in case we didn’t get paired.
Luckily for us, I knew better. I know that living with HIV will not keep us from adopting and it wouldn’t keep us from being great parents, nor will it prevent us from shepherding our kid(s) through the challenges of childhood. It also shouldn’t keep us from having a great experience while building our forever family.
Indeed, it didn’t take long for us to locate an agency that didn’t even flinch at our statuses. We are happy to report that we have selected an agency and are on our way to becoming parents. Still the experience had me thinking about when I hear, “HIV is no longer a death sentence.” The line seems eons away from where we’ve come. To say it’s no longer a death sentence is to say its only one step away from it.
Let’s be clear. HIV is now a manageable chronic condition. With treatment, we can live nearly as long and be as healthy as anyone else. And yet, we have not upgraded our language and adopted a new phrase that more accurately describes what life with HIV means in 2019.
So, I humbly propose that we retire the aforementioned phrase and adopt this new one instead: “Life with HIV is now limitless.”
As I start to shop for baby clothes and imagine the life I’m still so excited to live, this has never felt more accurate. HIV is a chronic illness, and although the barriers around this disease may be unique, we must shout from the rooftops that you do not have to sacrifice one damn thing because of your status. And if someone disagrees, the only thing you have to limit is your relationship with them.
My future is limitless, and so is the future of most people living with HIV, as long as we don’t allow anyone to tell us otherwise.
Editor at large Tyler Curry is also a contributing editor at The Advocate magazine and the author of A Peacock Among Pigeons. (@IamTylerCurry)