I awoke that day in 2008 feeling pretty great, knowing that I was going to help my friend out that same morning. The night before he had come to me in a panic about having condomless sex, and worried about possibly being exposed to HIV. During this time in my life, I was volunteering with a local organization that put on the AIDS Walk in the city we were residing in, and I was somewhat well-versed within the HIV world when it came to getting tested regularly and where to go for a test. So, I felt like he had come to the right friend. I remember reassuring him that night, and telling him that no matter what the outcome, everything was going to be okay. I even offered to take the test as well, for moral support, and because I was overdue for a checkup. I was approaching a year of the aftermath of a failed marriage, a year in which I had chosen to stay mostly celibate; therefore, in my mind, my test was more for moral support than an actual necessity.
Driving him to the clinic that morning, I could see the fear in his eyes; he was truly concerned about his potential results. All I could do was continue to reassure him that everything would be all right. After we checked in, they called him in for his test. Thinking back, I can’t recall why or how he ended up going first because the point of me being there was to support him, and in hindsight, I should have been the one to head back first. It wasn’t long before he emerged from behind a door, with a smile on his face. He was negative, and all his worries had magically disappeared. We then traded places and I walked back to a room with the HIV test counselor. Feeling rather confident, I engaged in small talk while she pricked my finger and proceeded with the rapid test. I was mid-sentence when I looked over at the counselor and heard her clearly say, “Baby, you positive.” I don’t know if I will ever be able to forget that moment, the sound of her voice or the feeling of having all the air knocked out of me at once. I sat there, silent. She asked if she could bring my friend in, and I nodded yes.
When the door reopened he was standing there, immediately taking over the role of supportive friend, the part I was supposed to play that day. He walked me to my car while consoling me, and then drove me home. The day had not gone exactly how I had imagined it would. I was thankful for my friend’s results but completely devastated by mine. Each year on the anniversary of finding out I was HIV-positive I like to look back on that day, and spend time thinking about how far I’ve come since that moment when I thought my life was over. It’s now been 10 years, and I can hardly recognize the person I was back then.
Two years wasted
Looking back, I wasted two years of my life feeling sorry for myself. The internal shame, guilt, and embarrassment were something I held onto. I thankfully formed a small support circle but then closed the doors to the rest of the world. I drank—a lot—and became depressed. I was fired from my job for not working and then I drank some more. This vicious downward spiral continued for months and months, until the day that the fog finally lifted and I was able to come to terms with my diagnosis. When I realized that my life was going to be just fine, as I had reassured my friend about his life that day in the HIV clinic, things finally started to come together. If I could rewrite history from that day, I would take the knowledge and confidence I have now and somehow give it all to my younger self, so that I could have avoided those two years of sadness and loneliness that I had created.
Advances in treatment
I was fortunate to have been diagnosed in 2009, when the development of highly active anti-retroviral therapy (HAART) had just reached its peak. I was quickly placed on a regimen and within months I was healthy and undetectable. That was it. Life was pretty easy living with HIV. I had some minor issues with finding the right drugs to take at first, but I experienced nothing that was life threatening. I’ve now been taking the same medication for almost seven years, never once having any issues or complications due to my HIV or HIV medication. One pill a day and life goes on. This certainly wasn’t the case in the mid-’80s or ’90s though, as things were very different then, and those who were diagnosed during the first waves of the epidemic and were lucky enough to survive live very different lives from the one that I live. During those times, the advancements in treatment were major breakthroughs, lifesaving to say the least. During my decade of being positive, we’ve gone from a three-in-one single-tablet regimen (STR) to a two-in one STR that does essentially the same thing. Obviously I’m simplifying the significance of drug research and advancement but the reality is, the changes we’ve seen more recently are subtler when it comes to HIV treatment. When it comes to prevention though, we saw the approval of PrEP (pre-exposure prophylaxis), so there’s been a lot we can all be thankful for.
When is someone considered a long-term survivor? I’d say a decade is a good starting point, so I’m officially categorizing myself a long-term survivor of HIV. Although I can confidently say that I’m in a new generation of long-term survivors, we are the second, third, and fourth wave of survivors living with HIV that came after the initial days of not even knowing what HIV was. We already had all the information out there. We knew the risks, and we were slightly conditioned to feel confident that everything would end up being okay in the end, if that day ever came where we were sitting in a room with an HIV test counselor holding a test strip that just determined we were HIV-positive. For us, things weren’t nearly as scary as for the original survivors, who in my opinion deserve our utmost respect because truly, they survived something most of us can’t even begin to fathom. But as time passes, and years are added to our lives with HIV, fresh groups of newly-diagnosed individuals begin their own personal journeys with HIV. Those new generations of long-term survivors, which include people like me who have primarily been on the same regimen for a decade or more, is expectantly waiting to see what effects these drugs will have on our bodies, but the truth is they are much safer, more tolerable, and easier to take than those earlier regimens.
To the future generation
For someone who is newly diagnosed, the good news is, life is most likely going to be just fine. In the 10 years since my diagnosis, nothing has happened to prove otherwise. We’ve come so far from where we once were, that now living with HIV is just like living life, with some slight modifications to your routine. I’ve personally reached a point where my healthcare provider asks to see me only twice a year; he would prefer it be once a year, but my insurance requires at least semi-annual visits. This is how far we’ve come in terms of life with HIV. I always tell people, “your HIV doesn’t define you, it’s just one small piece of what makes you, you.”
‘Those of us who are newly diagnosed or long-term survivors need to show the world and ourselves that life goes on.’
I would hope that one day, new HIV transmission rates will drastically drop, helping to finally put an end to the virus, but this isn’t possible until everyone is informed and aware about HIV. Those of us who are newly diagnosed or long-term survivors need to show the world and ourselves that life goes on. We need to be that person our friends can come to with questions. We need to be that friend who offers someone a ride to the clinic. We need to continue to spread the news about preventative options like PrEP and U=U. And finally, we need to stop hating ourselves for having something that we can’t fix or make go away. For me, it’s been 10 years, and I look forward to continuing to look back on my journey…in another decade and beyond.
David Durán is an HIV advocate and writer who contributes to a number of publications, and is a speaker and presenter at conferences around the world.