First Act - Part 4, the Stigma of HIV
Updated: Jul 14
When I was first diagnosed with HIV in 2002, I was lucky to gain access to a specialist who is a leader in HIV research and treatment. From my first set of tests, she assured me that I wouldn't have to start any kind of treatment for another 10 years or so.
So I never worried about myself then. All my focus was on Jeff as his tests showed he needed to start treatment soon.
Even after he died, my own status wasn't quite real to me. I was asymptomatic and the tests I submitted every six months continued to show I was healthy and the virus hadn't yet affected me.
So I was not prepared when only three years after her promise, my specialist said I'd have to start treatment. While still in the examining room, I took in the information she gave me about the drugs we would start with and their possible side effects. After our conversation, I went to the area with the nurses to submit another blood test. It was there that the news finally sunk in and I burst into tears. For the first time, the disease was real. I felt I had HIV in big letters stamped on my forehead. I already felt not normal because I had lost Jeff to suicide. Now with HIV, I was for sure damaged goods; no one would ever want me.
A few days later, I picked up my medication and one of the nurses went over with me how to take them and when.
Even though my doctor told me all about the possible side effects, nothing could have prepared me for experiencing them. With just the first dose, I felt dizzy, clammy and not at all like myself. After the next day's dose, I was even sicker. Almost as bad, it gave me really weird dreams. They were not scary per se - but were so vivid and intense that I would wake up panting and sweating, not able to discern whether I was still dreaming or awake. The dreams were also completely abstract - it felt like I was in a Salvador Dali painting.
The worst part was, I was not sick to begin with. But here I was, forcing horse pills down my throat, knowing that they would only continue to make me sick. In desperation, I remember after like the third day, I called the nurse, crying, "I can't take these side effects. I'm so sick... I don't want to take these pills!"
"I know," she said. "But you just have to work through it."
I didn't have a choice, so I "worked through it," whatever that meant.
I never felt more alone in my life. It was just before Christmas and everyone was busy with their own lives. There weren't a lot of people I could call anyway - only a handful of friends knew my HIV status. Staying in bed was all I could do. I felt incredibly dizzy and weak. I had no appetite. If I didn't have my dog, I wouldn't have left my place at all. The worst was over after two weeks. But even after that, I would still get those weird dreams and I couldn't stay up any later after I took the medication before bedtime.
Over the years, we changed my regimen as new medications became available. I remember I used to take up to five pills, some more than once a day. I'm currently on what my doctor calls the gold standard of HIV treatment, taking only one pill a day. I remain "undetectable," which means that the amount of virus in my blood now was so low, the blood test can't detect it.
Throughout all of this, I struggled to tell my friends about it. It was like coming out a second time because there is still so much stigma attached to HIV. And because I was super-sensitive to the moral and legal issues around HIV disclosure, I felt it was my duty to disclose in certain situations. Like the time I went to get a tattoo. Even though the industry had long been taking precautions already, the artist who saw me declined to do the work.
I also felt it was necessary to inform guys I was dating of my status. Sometimes, I did it even before I met them in person... disclosing online as Internet dating was just becoming the norm then. I remember one particular guy who messaged me - I had recognized him from around the village but was too nervous to ever talk to him because he was so handsome. Like an idiot, I disclosed right away as we chatted online and he just disappeared. Like gone. I resolved then and there that I wouldn't tell anyone until I felt they really needed to know. And even when I told myself that I deserved more than guys who would reject me based on my status, it was still rejection. And it hurt.
Not all reacted negatively. There were, of course, guys who didn't go running away, including my now-husband Kenneth.
The gay community still grapples with HIV stigma, which is unfortunate, because not only does it affect people living with HIV, but it also has a negative impact on the fight against the disease. It was not uncommon then for personal ads and profiles that said, "drug and disease free." Even now, some guys will still use the word "clean," as code for being HIV-negative. Very few guys are open and public about their status. A quick search for #HIVpositive on Instagram yields just over 106,000 mentions; #hotgays yields more than 1.6 million. Of the #HIVpositive posts, most are of quotes or are text-based... compared to the endless stream of male duck faces and shirtless torsos for #hotgays.
There is one silver lining in my HIV status, though - I have been able to access mental health services for people living with HIV specifically. That's because research shows a direct correlation between HIV and mental illness. My current psychiatrist always takes into account the effects of HIV as part of my mental health treatment. For example, apathy is common for people living with HIV, and fighting to stay motivated remains the most challenging part of my depression to this day.
So now you know about the significant events in my first act. It's taken me a long time to get to this point... to be able to talk about these emotional and traumatic events and to move forward. There were times I didn't want to move forward. I didn't want to be anywhere but in my bed. And there were times when I just wanted the pain to stop.
I am lucky that I have Kenneth in my life. It has not been easy for him, when oftentimes, he has to take up the slack when I am unable get out of bed. This week in fact, I had a couple of bad days and he had to walk our dogs and do the cooking, when we normally share the chores in our household.
On the whole, though, when I am able to get out of bed, I've been far more productive lately than I have been in a long time. I hope it is indicative of better days still to come.