Regan Hofmann, the editor-in-chief of POZ magazine, discusses Sex and Secrets at TEDxAmRing. Below is the full transcript.
Listen to the MP3 Audio here: Sex and secrets by Regan Hofmann at TEDxAmRing
Seventeen years ago, I went to Florida, to swim with the dolphins, with my mum and my little sister. And we were standing on the dark, watching the dolphins do their things, and I looked down, and I noticed this bump on my leg where it met my body. And I showed it to my sister and my mum and didn’t think it was anything too serious, and I went home, and I showed it to my doctor. And he gave me some regular blood test things, and said “Come back in a week and we will see what this is and get it cured up.”
I got a phone call a couple days later and he said, “Your blood work is inconclusive and shows something. We want you to come back in.”
So I sat in an exam room for a while, and he finally brought me into his private quarters which I thought a bit strange. But they said we’re just overstretched with people today, and we need you to be in his room. And then, the door bang opened, and five people in lab clothes walked in.
The first thing I thought was, “Oh my God, this is so serious that my doctor brought in back up”. And the second thing I thought was: “What, in God’s name, did the dolphins give me? I mean, you can see having kissing them, but I was to get some weird tropical disease from the dolphins.
And he said, “I don’t really know how to say this. I’m just going to tell you that you’re living with HIV”. And my mind just exploded and I’ve been so careful. I really thought I had known what I was doing with my body over the years. I’ve been careful, but obviously not careful enough. I’ve had unprotected sex and contracted HIV.
So I asked him, “How long I had to live?” It was 17 years ago.
He said, “About a year, maybe two”.
I said, “May I have a baby?”
He said, “Probably not a good idea. We now know that you can have a baby as a woman with HIV, and not pass the virus onto the baby”.
And then I said, “Can I have sex? Because anyway I’m going to die and not having a baby, and leave everything behind, I can at least, maybe have some sex and enjoy myself before I died”.
But he said also probably not a good idea. Fortunately, it was okay and I got a second opinion on that. But I didn’t know what to do. And neither did he. He was a GP and actually, this happens still today where people get diagnosed by someone who is not aware of HIV and doesn’t really know how to talk to their patients about that. Luckily, he gave me a prescription for Xanax and the number of the Gay Men’s Health Crisis and I pilled the prescription which was just disappointing me, but wisely, only a couple of pills and called the Gay Men’s Health Crisis. And I said, “I’m not gay. I’m not a man but I’m totally in crisis”.
And this young man on the phone talked to me for about an hour and a half and over the days since my diagnosis throughout the week, really helped me to gather and so I made it through the first week. Didn’t tell anyone for a long time, told the person I had recently been with. He was tested on positive. And then I went back to my history. And you can imagine those some unpleasant phone calls but luckily no one else was positive. So, we isolated the person and he was cared for.
But, I survived the first week with the idea that I’ll be medically okay but even from those first days I thought this is not a disease emotionally but anyone is well prepared to take on. And I didn’t tell anyone for three months. I just could not do it. I could not bring myself to say the words to my parents.
But eventually, the secret was eating me alive and so I told my mother, who was wonderful and gracious. And I told my father who was awesome. And then my mother told my little sister and my little sister — is on the right and I met her at the train station. We’re best friends and I could see, she came off the train all the way down the platform that she had already been told. I could see it in her face.
And she said to me, as soon as we were close, “We’re going to kick this thing’s ass. You’re going to survive this”. And we went into Burger King and as we were in a train station and we made this, our lake of ketchup, we used to mix ketchup and barbecue sauce, and share that together between us. And she didn’t not share my ketchup, she double-dipped her fries in my ketchup. And that was the first moment that I felt like I was going to maybe be okay because she was not treating me like a leper. And to do-not be treated like a leper and to have the three of the most important people in my life said that it was okay that I had this disease, not great but they would stand by me was critical.
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.
Sex is something that we all are going to have eventually, and I know that it makes people uncomfortable talk about young children having sex but why not arm them with information before the fact. Why not tell them what they can do to do this well and do this safely? We don’t put kids in cars and say, not teach them where the breaks are or the seatbelt, or the turn signal and say good luck with that. We teach them how to drive a car. So, we can teach them about their bodies, how they work, and how to put themselves and keep themselves in positive situations, that would be great.
In fact, I was probably, I am guessing – probably same five years ago I had my first really good sex ed class in that building. That’s the White House. It sounds a little weird, not in the white house. But we had a meeting about women and HIV associated with a White House event. And it was at that meeting, for the first time when I saw an OB/GYN, stand up in a group of 150 powerful women, Congress women, diplomats, very very intelligent people, and say, “Okay, who in this room knows the angle of a woman vagina when she is standing at the vertical?” And we’re all like I don’t know and like leaning back and forth trying to figure out.
And she finally said 45 degrees to the vertical and the back. But, I thought here it is — one of the most important, one of the most central issues in people’s lives, and we haven’t found a way to put comfortable talking about it. We don’t talk about HIV because it is linked to it. So I don’t know that the solution is making everyone comfortable about sex or talking about sex but it’s a good place to start. And I have, in the work that I’ve done, come to realize that almost anyone can talk about sex comfortably if they just are given license to, and they practice it in the bed.
My mom and I had never talked about sex until I got HIV. And I would sit in the doctor’s office just with her and think, here is the woman who had sex and had me and knows that I have had sex, but we never had this conversation. The fact that we’ve been able to talk about the things that we have, has brought us so much closer together. So I’m hopeful that if my mom and I can have easy conversations about sex now that anybody can have comfortable conversations about sex.
I think that where we are in the world right now with HIV and AIDS is that we have a solution, that’s the easiest one we’ve ever faced. We have an opportunity before us that’s remarkable. We have two-thirds of the people on the road not on treatment. But we have the treatment that works. We have prevention that works, we have political will, we still have a great deal of capital being applied. We’re further along in the science that we ever have been on the cure and vaccine front. We’re talking literally about ending this epidemic in our lifetime. It will not be easy, it will not be cheap, it will not be overnight, [it is servable]. But the one thing that will help us do that and allow us to apply the tools that we have in a very broad and even ended way is to take the hysteria out of this topic.
When you think about it, everybody deserves access to healthcare, everybody deserves a shot at surviving some viral and then that comes into their body. And when you look at what happened with breast cancer back in the early days, they couldn’t even talk about the first lady’s breast cancer when Betty Ford announces she had it because they couldn’t say breast and they couldn’t say cancer on the evening news. And the reporters were like how are you going to talk about the story.
So I think now, you can get on an airplane in October and you can have a half price pink margarita because we’re going to give only the breast cancer and celebrate it. We’ve come so far. I don’t see why we cannot come to the place in the world where we can be on an airplane and get a half price Bloody Mary for AIDS. I mean I just feel like we can get there. And what all it takes is opening up our minds, rethinking the way that we thought about this and realizing that people who are living with HIV like myself are not bad people, but they’re pretty good people with a really bad disease. And that we will do better, we will do much better in our personal health, and therefore public health, because when we’re on medication, we’re less infectious, we will improve. And all we need is the support of people like you all around the world who just rethink why we think HIV is so terrible and have the courage to talk about it with your friends, with your family members, with your kids, with each other and take the hysteria out of it.
And that is the path to the end of the AIDS. And I am grateful for all the people who came before me who had the courage to speak about this. It still takes the spit from my mouth when I think about coming to a group of people and having to say “I have HIV.” But I do it so that someone else doesn’t have to sit in a doctor’s office some day and have that door bang open and have five people in a lab clothe walking and say “I have something to tell you, you have HIV. You’re going to die of AIDS” That doesn’t have to happen. And speaking about it is the key to ending it.
So, thank you very much.