The truth? It fucking sucks. That’s the deepest and most honest answer someone who is HIV-positive can tell you about living with the disease. Is it manageable and tolerable? Yes, of course. With advancement in treatments, living with HIV does not have to be burdensome, but no one-a-day pill will ever take away the real truth that there is a deep pain felt inside those of us who are positive.
I personally know how easy it is to trivialize what it’s truly like to live with HIV. But are we spending too much time glorifying the ease of medication and treatment? Are we convincing others and ourselves that HIV is not as big a deal as it really is?
“Get tested.” “Know your status.” “You can take one pill a day.” “Undetectable makes it safe.” These are the phrases that we are pouring over gay youth while “educating” them. Is HIV going to kill you? No, most likely not. Can you live with it, and live a normal life? With treatment adherence, most can.
I’m all about showing the world that I am just another person, living a normal life, while also being an HIV-positive man. I feel that I am doing just that. But what I’m guilty of not doing is talking about something that needs to be discussed more by others who are also HIV-positive: the reality that life will never be the same and the mental and social ramifications of having HIV are heartbreaking.
Imagine if advocates actually told the truth about how they feel instead of masking their feelings with encouraging anecdotes. If they admitted that self-acceptance comes with a long and dark journey. That disclosing your positive status is one of the most gut-wrenching processes that you will have to repeatedly go through, and it won’t ever get easier. That figuring out how to strategically hide your medicine bottle so that your friends, neighbors, repair people, and airport security guards don’t see it will become routine. That not knowing the long-term consequences of taking HIV medication will keep you up at night.
For me, self-acceptance came after two years of denial, heavy drinking, and abundant anger, shame, and embarrassment. I was a volunteer at an HIV/AIDS organization, so when my status changed overnight, I felt as if I was living a lie and I couldn’t be honest with anyone aside from a few close friends. Being a single man, disclosure is still incredibly difficult. Sometimes it’s just easier to not meet that person or to end an online conversation instead of uttering those three letters. I’d like to say that I no longer feel any shame, but I think there will always be an underlying layer of shame that will remain with me.
I’m not a gloomy person. Quite the contrary—I’m generally an outspoken, vibrant, overly happy guy. But I am human, and I have my moments of sadness and depression. And those moments are elevated when the reality of my status makes itself present in my life.
Does it hurt? Obviously it does. I put on a brave face and do what I can to help comfort newly diagnosed folks. Listen, it does get better, and the intense mental anguish won’t be forever or as frequent. There’s not much more I can do than just be a resource to those who are new to the club.
But when preaching prevention, I’m ready to change my tactics, and I truly hope others are as well. Why not speak about what we are truly feeling? Why not tell our stories of hope and encouragement but also tell the truths of the mental pain HIV causes? Maybe then, those who are fortunate enough to be HIV-negative will take HIV more seriously and stop taking their negative status for granted.
David Duran is a Brooklyn-based freelance journalist who focuses his writing on travel, entertainment, LGBT, and HIV topics.