Time to Reboot

Two years ago, I was living in a small town in Georgia. Nurses in the South sugarcoat everything. They smiled sweetly over their clipboards and called me “honey” as they led me into a tiny waiting room inside the clinic, a little room I had never been in before. I didn’t understand what was going on. I had gone there a week before to lend emotional support to a friend getting his first HIV test. I knew I was fine — I had tested negative for HIV less than a month earlier — but I tested again to show him it was simple and easy to do.

A stranger named Rebecca sat in this back room with me, also waiting for her test results. But when the stern, blond, churchy doctor — the kind of woman my mother would gab with about casserole recipes — walked in the room, she asked Rebecca if she was there to support me. Rebecca looked sideways at me and said she wasn’t. Then the doctor said, “Honey, I need you to wait somewhere else.” 

That’s when I knew. 

From the beginning, I distrusted my HIV medications for the same reason I distrusted the institution that was trying to give it to me. I hated the doctor who told me I was positive with her grim, wide-eyed look, who in the same breath suggested I join her local church. 

“They’re very welcoming,” she said. 

She knew I was gay. Because of the gold cross dangling from her neck, I knew she saw my diagnosis as a natural occurrence for someone with what she’d call my “lifestyle choice.” Accepting medication from her felt like kneeling and taking the Eucharist, and I wasn’t about to say sorry to an all-powerful God who allowed HIV to exist (presumably just for kicks?). 

At the time of my diagnosis, I believed HIV and AIDS were synonymous, and I saw my life as officially over. When the doctor told me I needed to get on meds as soon as possible, I saw it all — the medications, the doctors, the scheduled appointments — as invasive and impersonal, and initially wanted no part in it. 

I soon learned that I wasn’t going to die any time soon, but I still had many questions that were left unanswered. What were the long-term side effects of the medication? Were there any lternative approaches to HIV than the one I was being corralled into? What were my real options? 

The staff at the extremely small Ryan White–funded clinic I was sent to just didn’t have time to answer my questions. They were and still are in the middle of a Southern HIV epidemic. With limited resources and a fiercely homophobic culture working against them, their first priority was getting everyone, including me, on meds as quickly as possible. They didn’t have time to explain why.  

Two years later, I know why. Starting meds early is a collective prevention method called “treatment as prevention.”  The more people with an undetectable viral load, the less new infections will happen, and the virus can be contained and controlled. In the South, where HIV infection rates are soaring, that goal involves a very real, very uphill battle. 

But I didn’t know any of this at the time. A couple months later, when I went in to the clinic to get my first month’s supply of antiretrovirals, I did so begrudgingly. My distrust of the medications never left, and the two years that followed were filled with many missed days and many drug “vacations,” some lasting weeks at a time. As I traveled back and forth across the country in attempts to start my career, there were many missed doctor appointments too. 

Now, two years later, I live in Los Angeles. And I keep getting sick. Why? Because I haven’t been adhering to the meds as well as I should have. Party weekends that I used to recover from effortlessly now result in sinus infections and strep throat. Worse, these opportunistic infections are not getting zapped as quickly as they should, because my immune system is weaker — because my HIV meds are no longer working. I had made a textbook mistake. 

When I was so sick that I could not swallow and was not getting better, I knew something was wrong. I finally went in to talk with a doctor at the Los Angeles LGBT Center, where people did have time to answer my questions and did so without underhanded judgments and subtle shaming. 

We talked about my fears and distrusts, and I left the meeting realizing, finally, that the drugs are necessary because I am going to get sick, and when that happens, I want an undetectable viral load. 

Regimen failure and drug toxicity are the two most common reasons people switch medications. Regimen failure due to poor adherence was certainly my primary reason. Drug toxicity can take such forms as poor interaction of the drugs with other medications or bad side effects that make taking the drug miserable. For me, the side effects were also part of the reason I decided to switch. 

The first medication I tried caused a lot of emotional problems for me, and after talking with my doctor, I learned that particular drug can sometimes do that. We made the decision to start me on a different drug, and so the process has begun again as before: I was retested, they took tons of blood, and now I’m scheduled to begin a different treatment regimen in a few weeks. 

The most important part of this process was facing up to the fact that I wasn’t adhering to the meds properly. You tell yourself you’re going to, but in practice it’s considerably harder to do — and it’s even harder to admit that to other people.

I understand the fear of switching medications, because it’s not unlike the fear of starting meds for the first time — a fear I certainly empathize with. It’s a new drug with perhaps all new side effects, and you wonder, Why go through this again? But if a drug isn’t working for you, as mine wasn’t working for me, switching is vital and should come with a new mentality. 

For me, that new mentality is one of adherence and self-betterment. Sure, I have my tail between my legs and have learned an important lesson, but rather than see this as a failure on my part, I’m stepping forward: This is my turnaround, my restart.