Living as a Woman with HIV

This article is part of a series of stories inspired by our latest documentary, Stopping HIV? The Truvada Revolution.

As a sex writer, sometimes you think you've heard it all. So when I started hanging out with a fellow Scorpio contributor named Casey, who works for Poz magazine, where she spends her days researching and reporting on HIV, I was shocked to discover how many misconceptions about the virus persist. When it came to the reality of HIV, even I didn't know shit.

For instance, with medications today, as an HIV-positive woman, you can have unprotected sex with a 96 percent lower chance of inflecting your partner. If the side effects of the meds get to you, that's what the medical marijuana movement is for. (Though Casey works at Poz, she is HIV negative, in case that was another misconception.)

To educate myself and just get to know some badass ladies, Casey and I talked with three different women living with HIV. Erin Dolby is a former Arizona beauty queen and current activist. Damaries Cruz treated her HIV holistically for 20 years before seeking HIV meds when things began to decline. Malina Fisher has developed a YouTube following for her videos in which she discusses living with HIV, and has been called "too hot" to have the virus. You can't be too hot, or too educated, or too rich to become HIV positive, but you can be HIV positive and still be a powerful, sexy woman. As the "mama bear" of HIV positive women, Tami Haught gave VICE a bit of advice for HIV-positive women: "You can live a full life. Plan your future. Your options are unlimited now. With HIV, you can do whatever you want to do, and you need to plan on it. For [yourself] and the community as a whole."

—Sophie Saint Thomas

VICE: Hey Erin! So congrats, you recently got married right?
Erin Dolby: I did. We met in the rooms of a 12-step fellowship. I had been asked to be in a fashion show and so had he. He was also DJing that fashion show, and I think that was our first kiss and probably our first everything else. That night before anything happened I sat him down and was like, "Look you already know my story, I'm HIV positive, I have hepatitis C, I have herpes." And he said, "That you're so confident and open about it makes me that much more turned on by you." It encouraged me and made me feel so much more beautiful to know that I could be that open and raw and he wouldn't judge me at all for it. A few months later we were pregnant for the first time and he proposed. I lost the baby. I had a miscarriage. I've had two subsequent miscarriages since.

I'm assuming he's HIV negative then. How do you guys have safe sex?
He's HIV negative. I'm just very adherent to my medications. We don't use condoms. He gets tested every once in a while. I take Truvada, I use treatment, and for a heterosexual couple with a female who is adherent to medications—I mean, I'm even undetectable without meds. There's really very little risk.

So does that mean that you have non­progressive HIV?
You know, my CD4 kept dropping—384 was the lowest I ever got. I think I started taking medication when I was at 410. And the highest my viral load has ever been was 104. So I'm close to being a non­progressor. I also got sober right when I found out. I was in treatment for drug addiction and 21 days sober when I heard the news.

What were you recovering from?
I was a meth addict, and my other drug of choice was GHB. But what I believed happened [to contract HIV] was that I was careless in my sexual choices. I heard rumors about a guy [that] he was an IV drug user and I had condoms in my purse, but at that point, I either just didn't care or didn't think that [HIV] would happen to me. I had even done some sex work during my addiction, but I was always safe in my sex work. It was in real life, in my personal life, that I was careless.

Can you tell us about your transition from pageant girl to addiction?
I was crowned Miss Arizona in 1996. I didn't win Miss America, but I was in the pageant. After my year of service as Miss Arizona was up, I started experimenting more and more with drugs. I started using drugs in May of 1999, and my addiction lasted until February 1, 2010. So I was in active addiction for 13 years.

I had been molested as a seven-year-old by my best friend's father. I just kept that a secret. My parents didn't find out about it until I was 19. My friend, she had pressed charges against her dad and I got subpoenaed to testify against him. I think that was when I fell into my first real depression, where I just couldn't leave the house and I couldn't eat. I think that was the start of disease in my life. I started experimenting with drugs. Within a year, I was cocktail waitressing at a strip club. Next thing you know, I was on the stage. I don't even know how that happened. At the time, strippers and bartenders were kind of glorified and I was dating club owners and feeling popular and falling deeper and deeper into addiction.

What sparked your decision to go to rehab?
I don't think I made that decision myself. I was hanging out with some pretty bad people and my house got raided for credit card fraud, and I was on probation for drugs. I got pulled over and I had drugs in my car. They raided my house that evening—this was January 28, 2010—and that's really when it all started. The eviction notice came and my father was terminally ill with colon cancer, and I had just started seeing a therapist and she said, "You know what, Erin, it's time. You're 34 years old and your life isn't going anywhere."

I was totally unemployable, I wasn't even getting work as a sex worker anymore. My mom said, "Your dad's too ill, but what do you want to do?" So I asked him for a gift and that gift was to go to treatment. I still don't think I had any intention of getting sober. I was just going into treatment to get everybody off my back. But what happened there was totally something else. It wasn't me. I say that being a very spiritual person now. I don't think I was strong enough to ask for an HIV test, but something made me ask for this test and I sat in my room when they told me, and I sat in my room for a couple of days and cried. Because I didn't know anybody who was positive. My fifth grade teacher died of AIDS in '85 or '86. He was one of the first people. And that's what I remember. My fear of dying wasn't even as big as my fear of getting AIDS.

So, babies! How are you conceiving your child, and what preventative measures are you taking to keep your kid from getting HIV?
I just had a really open dialogue with my doctor, the first time we got pregnant. I saw a specialist and learned that I was going to have to have a planned birth and it was going to have to be a C-section. My doctor kept telling me, "We haven't had an HIV­positive birth in 13 years." So that gave me a lot of hope. When I talked to my perinatal specialist, she said, "You can have a vaginal birth. Why would you think that you can't? As long as you're doing well, and keep adherent to your medications, there's no reason why you can't have a natural birth." I really haven't had any thoughts or fears about that.

What dating and sex advice do you have for other HIV­-positive women?
The most attractive and empowering thing that you can do for yourself as an HIV­-positive woman is be armed with knowledge. Be comfortable in your status. I've really taken control of my body. I listen to it and what it needs and I got really well-educated before I embarked on dating or sex. If I walk into a situation knowing that I'm comfortable in my status and comfortable in my body, that speaks volumes to other people. I'm no different than you. I have a couple of other things that I do to take care of myself. I get my quarterly blood draws and I speak very openly and honestly with my doctor. Having a doctor that really knows women is really important too. I do what I can to make myself feel pretty. That's my own responsibility. Nobody else can make me feel beautiful. But beauty comes from the inside out and once I began feeling pretty on the inside, it just came out.

Can we go over your diagnosis story?
I didn't know anything about HIV. But we were using protection all the time because I didn't want to get pregnant. I thought it was just for that. So when I met the person I was engaged to at that time I fell in love and I didn't think about anything. You think this person is going to be really honest with you. At that time [20 years ago] they were saying that you had to be a prostitute or use intravenous drugs to be exposed and I didn't fit into that.

My fiancé lay next to me every single night. So we had this conversation and I asked, "Have you been tested for HIV?" And he said, "Yes, I'm negative." I trusted him. And one day I decided to have sex with him and we had sex. I had HIV the year before I was diagnosed because the year before I was having yeast infections for a whole year and they were so bad that I was bleeding. The doctor thought that I had cancer. And he said let's do a biopsy, and then he did HIV, just to rule it out. When I told [my fiancé] that he had to go and get tested, he said "I knew I was going to take someone with me, I never thought it would be you." I realized that he knew. I was still going to marry him, but I wish he would have told me.

Did you keep seeing him?
I was in love. And I thought no one was going to accept me, we might as well have each other. I never hated him; I didn't have time for that. We started planning our wedding, and a week before our wedding he was sleeping with someone else in our bed. He passed away two years later [of AIDS-related complications].

What's something you wish you'd known when you were diagnosed with HIV?
I just wish I knew then what I know now. Thinking that since I was having sex with only one person, I was immune to it. Because I didn't think in a hundred years that [HIV] would happen to me. I wasn't sleeping around or doing anything risky, per se.

I'm OK with living with the virus. I've accepted it. But I would hope that nobody would have to walk in those shoes if they don't have to. The worst part about living with the virus is not really the virus, it's the stigma, and depending upon who you are, the side effects, because they can get really bad.

The first thing I thought when watching your YouTube videos was "Oh my god, she's so hot." You said in one video that people tell you that you're "too hot to be HIV-positive."
Yeah, they assume we're dying and have sores all over us or something. People's perceptions of HIV are still rooted back in the 90s. But it's not the 90s anymore. People will look at me and say, "You're not a toothpick, you're not a skeleton, you're not sickly looking." I'm not supposed to be. I take care of myself.

Follow Sophie Saint Thomas and Casey Halter on Twitter.