So I was medically okay, and the drugs really do work. It was — at the time when new drugs were just being released, we weren’t really sure what the long-term side effects would be. We didn’t really know whether they would work long term. We now know that treatment doubles its prevention, and people who adhere to the drugs properly, and your viral load can be completely suppressed, so that actually, you’re not infectious. I mean you are technically still living with HIV, you do need to take precautions. But it’s like being on antibiotics when you have a flu. People around you feel a little bit safer and in fact, you have reduced the risk of the spread of HIV.
So, I was medically okay but not emotionally. And the stigma was crushing. And I thought, well, how can I? I don’t want to put this level of shame on myself. And I don’t want wear the shame that some in society would have me wear. So, how can I change my mind? How can I see this differently?
So I started with the fact that “What have I done?” So I’ve had unprotected sex which is something literally that all of our mothers did, right ? So, I mean, somewhere along the line, I don’t know? — Oh! this is me. Hold on. There! Somewhere along the line everyone’s mother had unprotected sex. So if I did something truly terrible, then everyone’s mum was in the same boat.
The other thing I realized was that HIV, really is just a virus. It’s a beautiful, beautiful virus in terms of how it works. I went to my doctor and asked him to show it me. I said I want to know what this uninvited houseguest looks like in my home. And I came to appreciate its beauty and understanding. It was just trying to live like I am. I mean it was just doing what all living creatures do.
But more importantly, it was a virus, nothing more, nothing less. I’ve had unprotected sex, and the virus happened to be present; Someone else had unprotected sex and the virus didn’t happen to be present. That doesn’t make me a terrible person, it makes me a biologically unlucky one. And that’s an important distinction.
And then I thought about, well, what if we didn’t get HIV sexually? What if you could like inhale it, and just sniff it in, and you could get HIV? Would it be different? Yes, because we associate HIV with sex and sexuality, which for some people is an uncomfortable topic. In a world where we’re often driven by sex, thinking about sex is all around us, we still haven’t gotten that comfortable talking about sex. And so I think it’s the association with sex and sexuality that makes people uncomfortable about HIV.
When I talk to school, I often say, this is a disease of my immune system. Sexual transmission is one way, you can get HIV but it’s not the only way. And it’s really my immune system that is not well. The virus borrows the cells of my immune system, destroys them in the process of its replication at a rate faster than the body can reproduce those immune system cells. So that your immune system eventually becomes unhealthy and so you dive in the things that you wouldn’t ordinary die of: pneumonia, opportunistic infections. If you can keep your immune system strong, which the medications do, you’re perfectly healthy and normal, and you have a very strong immune system.
So, it’s just a virus, it’s got a medical solution. We have tools that can really keep people alive with HIV, but there is this thing called stigma that is just devastating. When someone gets cancer, they get flowers. When someone has breast cancer, they have a whole support system. But, for HIV, it’s different, you can get stigmatized, ostracized, discriminated against, criminalized, even killed in some countries and some places.
So after 10 years of not dying, but living in silence and not telling even a single friend, because I was so afraid of the shame that I might feel. I decided to work as a journalist behind the scenes. I work for a magazine called POZ, anonymously. Eventually, I decided that, I’m going to get back to that. This modo, silence equals death and this is a piece of art from Gran Fury which was the clarion call of ACT UP in New York, in the early days remain true. If we don’t talk about this, if we don’t tell people how not to get it, if we don’t tell people that the drugs can save your life, they will continue to die, they will continue to get the disease unnecessarily.
So finally, I found the courage to come forward, and actually come out from being anonymous. And I was on the cover of POZ magazine and became its editor. And then I worked since that time and now have a good fortune to work at U.N AIDS, a U.N Agency focus on any needs worldwide.
So I came forward and did my own brand of speaking out. What has happened to me help in terms of my own personal health is that I now am no longer harboring that shame. And the people around me who I meet — who are in the same position and who haven’t spoken out it just takes one person. For me, it was the people who I saw, who came before me that helped me. And it was, in my case, a group of young gay men in a support group. There were no support groups for straight women. So I just said, can I go on – and I wasn’t comfortable talking about sex. And this group of gay men made me very comfortable talking about sex, my body and everything that happened to it. And also the agency that I could have with what would happen to my body. You know, that’s something we don’t teach people and we certainly don’t teach children.