I'm Not a Bad Person for Getting HIV, Just Unlucky
Regan Hofmann is the editor-in-chief of POZ magazine, a publication and a website for people living with and affected by HIV/AIDS. She herself has lived with HIV since 1996, and she first publicly disclosed her HIV positive status in April 2006, appearing on POZ's cover above the words “I am no longer afraid to say I have HIV.”
Hofmann is also a board member of the Foundation for AIDS Research (amfAR) as well as many other AIDS activism groups. She has served as a U.S. delegate at the United Nations’ General Assembly’s Special Session on AIDS and has traveled internationally on behalf of the U.S. Department of State to speak about HIV/AIDS and stigma.
In 2009, Simon and Schuster recently published Hofmann’s memoir I Have Something to Tell You.
Question: How did you learn and cope with the news that you were HIV positive?
Regan Hofmann: I found out I was living with HIV because I was swimming with the dolphins and I reached down, I was in my bikini, and I touched my sort of leg and I found this bump, it was a swollen lymph gland. And I went to my doctor and he didn’t think much of it and neither did I and I’d been tested for HIV frequently. You know, annual exams; I’d do my annual OB/GYN exam; I’d volunteered for Planned Parenthood; I’d gotten tested before I was married. I was really, really vigilant and aware. But by the mid-'90s, I no longer really worried about HIV, I just didn’t think it happened to women. And so I let down my guard and had unprotected sex. And then when we found this lump, the doctor asked if he could test me for HIV and I said, "Sure."
And I literally didn’t even think about it until I got a call. They asked me to come back, they said my blood work was inconclusive and I sat in my doctor's waiting room and they moved me to his private office, and gave me a Diet Coke and I was sitting in this like Lay-Z Boy Recliner watching Jerry Springer on TV actually. And the door banged open and five doctors came in, in lab coats and the first thing I thought was that I had gotten some weird tropical disease from the dolphins and I was going to be quarantined. And I never even at that moment of terror did HIV enter my brain. I just didn’t even remember that I’d been tested for it.
So when they said, “I’m sorry to tell you, and we don’t really know how to tell you, but you have HIV.” I just about died. You know? And it was so shocking and for me it was not only fear of death, fear of illness, but the stigma and what would my family say? What would my friends say? Would I ever date again? At the time, I was really, really distraught. And I only told my family. I waited about three months and then I told my mother and my father and my sister. And they were incredible. But then I didn’t really tell anybody else for 10 years until I... you know, I told a few of the people... well I told everyone that I was considering dating, which was only a few people. And I didn’t really tell anybody else until I came to POZ. And then in January, 2006, when I took the position of Editor in Chief and came out on the cover of the magazine, that was when I really told the rest of the world.
And you know, it’s been almost 15 years now and I have to say, it still takes the spit from my mouth when I say it. You know, I speak almost weekly to strangers about it and it is still so scary because of the stigma and because people I know judge me and think I’ve done something or pass value judgments on me as a person when all I did was something that most people do at one point or another, let’s hope anyway. And the virus happened to be there when I did it and it just didn’t happen to be there when someone else did it, but it doesn’t make me a bad person, but it makes me a biologically unlucky one.
So I fight to reduce the stigma because the stigma is what kills people. It’s what prevents people from getting tested. It’s what prevents people from getting the emotional support that they need that could save their life. It’s the thing that prevents people from linking to care.
Question: As someone living with HIV, how challenging is dating?
Regan Hofmann: As you can imagine, dating with HIV is not a bowl of cherries. It was harder, in some ways, when I was not disclosed publicly because of course, my first concern is, I’m going to tell this person I probably don’t know so well. My deepest darkest secret and that issue of
So it is challenging, but I will tell you this, if you want to know about someone and what their intentions are towards you, to separate things, it’s a great litmus test because I think it’s really enabled me to really understand the character of a person who I meet when I first meet them. And also understand what their intentions are with me. If they are serious about me and care about me, they’re probably likely to stick around and get some information and maybe entertain the thought of dealing with it, and if it was a casual thing, then maybe not so much. But that helps me weed out different characters and different intentions. So it’s actually a really great tool in a weird way.
Recorded November 23, 2010
Interviewed by Max Miller
Directed / Produced by Jonathan Fowler
Hofmann found out in 1996 that she had contracted HIV, something she kept private for ten years. Even to this day "it still takes the spit from my mouth when I say it," she says.
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