When you tell someone that you’re HIV positive, the question they always want to ask is "how did you get it?" Some people just come right out and say it. Others are polite enough not to ask, but you can see the question sitting there, lingering behind their eyes. So inevitably, every time I tell someone that I’m positive, I think of you. Not in anger, or resentment, but of the things about you that make me smile.
I remember our second date. We were having Japanese on the outskirts of Denpasar and it was rather mediocre. Each mouthful you took brought about this tortured look on your face but you finished your meal, rice and all. You couldn’t stand the idea of upsetting the cook. That’s the level of detail your kindness goes down to; down to a grain of rice. I didn’t finish mine—you’re a better man than me. Throughout the night your hands fluttered like butterflies when you talked. They covered your face when you laughed, and you’re very generous with your laughter. It’s the little gestures that stick in my mind.
It wasn’t long after that date that we parted ways. I had to go home to Australia. Bali might be the island of cinlok but for the first time in a long time it was me that was leaving. I returned to Australia on Christmas eve, but by New Year’s Eve I was in bed with a rash and a fever. At the doctor’s office, we checked for everything, but I wasn’t particularly worried about HIV. I’m a sexually active guy but I test regularly, and that time around, I didn’t see anything I did as particularly risky. A few weeks later I sat in a doctor’s office and found out I was HIV positive. I was upset and confused. Even though I knew that HIV is treatable, finding out I was positive still felt like a weight. It still hurt.
One of the most stressful parts of an HIV diagnosis is the thought that you may have—in ignorance of your status—passed it on to someone you care about. My heart was in my mouth when I sent out messages on WhatsApp. It was a short message, asking them to test and telling them where to go. I had been testing every six months, so luckily I knew the time frame I had to return to and could write a list of guys who might be at risk. In total I had to contact three guys, including you. I was lucky, they were all empathetic and understanding. They all had the courage to get tested and didn’t look for someone to blame. Anger and blame are a common reaction, but we’re all adults. We all make our own choices, and moments like these bring us face to face with some uncomfortable potential consequences. We must remember that anger just keeps the silence going, and it is silence that ultimately brings the most harm.
Of the three guys, two came back negative, and one came back positive. It was you, with your quick smile, and even quicker laugh. You with your impeccable manners. We were both shocked. Both hurt by the apparent unfairness of it all. But in the face of it, we showed our strength and kindness. HIV doesn’t care who you are. It doesn’t care if you’re “good” or “bad”. It just wants a body, and given the opportunity it’ll find one.
When you told me how low your CD4 was (a number that indicates the strength of your immune system), I was scared for you. We discovered that you have had HIV for a long time. Maybe years. You didn’t know, and you hadn’t tested. Your immune system was slowly being overwhelmed. I was met with the knowledge that maybe if I didn’t get HIV, if I hadn’t taken the step to ask you to get tested, that this could have been a very different story. A story of hospitals and death. This is how the silence brings harm. It isolates us and makes us vulnerable.
People avoid testing for HIV, because they think that HIV isn’t just a test for a virus but a test of your morality. That in order to be found positive, you have to be a “bad” person; someone who did something wrong. You told me you had avoided testing out of fear, and because you couldn’t see how you could be positive. You’re a middle class, educated guy. Romantic. Monogamous at heart. Along with silence, stigma can also blind us. If we can’t see that HIV can affect anyone, and that all it takes is one risky choice either by ourselves or by our partners, then we’ll never see an end to death from HIV. Never take the steps to protect ourselves and the ones we love.
It's been a few months now and we’ve been going through this together. We’ve both started treatment; both weathered the storm of the early side-effects and bureaucratic medical systems. Soon your immune system will be strong again, and with luck, both of our viral loads will be undetectable. What scares me now is not your health, but the stigma of the community around you. Only 33 percent of Indonesians confidently say that they can’t contract HIV from sharing food with someone with HIV. With this level of misinformation, I worry for you and everyone else living with HIV in Indonesia. How can we expect compassion, when there are still so many people reacting out of fear?
That’s why, despite the stigma, I’m sharing our story. A story of HIV, of sex, of love. Of awkward dates and bad Japanese food. That’s what we need now: more stories. Because the stigma, the silence, could have stopped me contacting you. It could have stopped me getting tested at all. It could have stopped us both living the life we’ve been given. It could have killed us both. Not HIV, because HIV is treatable, but the silence and blindness brought about by judgement and discrimination.
The world now has the tools to let people living with HIV live just as well and long as those who don’t have HIV. We have medication that, when taken correctly, stops any chance of transmitting it to those closest to us and keeps our immune system strong. It’s stigma that’s holding back the full impact of these innovations. It’s all of our responsibility to know our status, and to ensure that our loved ones know theirs. More importantly, it’s our responsibility to hold back our judgement of those who do have HIV. To talk back to hateful comments and to say no to people who spread unnecessary fear. Most of all, we need to extend care and compassion to those of us who are living with HIV. We are just here, trying to live our lives like everyone else—and some of us, only some, even finish all the rice on our plate.
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If you're in Indonesia and you need more information about HIV, or want to get tested please see Gue Berani or Update Status or you can ask any questions you might have anonymously by using Line with Tanya Marlo. For more perspective from someone living with HIV see Acep Gates on YouTube.