First Person: What It's Like To Live With HIV In 2016
An HIV-positive woman explains how her life has changed and what she wishes people knew.
BY As Told To Corey Atad | Nov 30, 2016 | Fitness & Health
"Your test did come back positive," she said over the phone. My boyfriend was lying there, and I felt the room spinning. It was October 1998. I always think of that, because the Padres were in the playoffs. I like telling the story; I don't get to very often. My boyfriend had been in my life since I was 15. For the next 16 years, we each had intense, romantic, passionate relationships. In graduate school, he and I finally made a more traditional go at being a couple. He became sick, throwing up every morning and suffering rashes all over his skin. I would lie awake at night and hear how shallow his breath was. I don't know how he became HIV-positive. I don't even know if he knows where the virus came from. When he was diagnosed, I immediately got tested. The results came back, and my life changed.
Today, I live in the Central Valley in California and teach creative writing at the University of California Merced. I write poetry and do performance art and children's performance. I go out with friends. I'm in a committed relationship, four years strong. My diagnosis is still a part of me, of course. It took some work with self-acceptance. While my HIV status doesn't define me, it's a huge part of what I've lived through.
When he was diagnosed, I immediately got tested. The results came back, and my life changed.
In 1998, it was kind of a good time to be diagnosed with HIV, because there was already a lot of hope around the disease—but of course, I didn't see much hope at the time. I leaned into my creative work, and I did a lot of performance art about it. That was my way of coping. I also got involved in the Rethinking AIDS movement, which proposed that HIV may not be the cause of AIDS. I didn't want to go on meds at the time. Honestly, I was afraid of them. I thought that if I exercised and ate right, I could boost my immune system, but I did not have the discipline. My T cell count got lower and lower, and I was lucky not to get any opportunistic infections. Eventually, it became a dangerous problem.
Since then, I've surrendered to medication. Three meds in one pill. Just one big pill. At first I was managing side effects with my doctor, but eventually we got the combination right, and they mostly subsided. Every three months I visit a specialist in San Francisco. It's always fun to have an excuse to leave the conservative farmland and go to the city… even if it is for a doctor. There aren't many resources for HIV treatment where I live, which makes it a little tricky when minor illnesses crop up.
Courtesy of Dawn Trook
Getting over the stigma of HIV has been a more significant challenge in some ways. I used to be very upfront with people, telling them about my HIV status almost right away after meeting them—probably as a way of pushing them away, honestly. I don't do that anymore. I don't want to be seen only for my status. By now, though, everyone important to me knows, including the people I work with. For the most part, it's all very positive, but I can't always escape the way people view me. Once a year I write a post on Facebook about my HIV status, and the amount of courage people think it takes to post about it shows me how much stigma there still is.
I've ended friendships over my status. After the first date I went on after being diagnosed, the guy called me later to say, "What were you thinking? How would you think I would want to be with you?" Another time, a friend suggested a guy didn't call me back after a date because he was spooked by the HIV and then went on to say, "It would be a problem for me." Those moments stick with you, but I don't get that as much now. It happens in a much more subtle way, a more pathetic way, like people who hear I'm in a committed relationship and say, "That's proof he loves you, that he'll be with you." In a way, my diagnosis has become like a sieve, helping to find the people in my life who can deal with me the way I am.
Everyone important to me knows. For the most part, it's all very positive, but I can't always escape the way people view me.
Being in a relationship has grounded me. For a long time I doubted myself in that space. It was hard to talk about. I thought, "Why would anyone want me? There must be something wrong with somebody who wants to be with a person like me." I try to combat those voices inside and to raise my self-esteem. I had some shorter-term relationships over the years, and my status was usually less of an issue than I expected. Now I'm in a longer relationship, with all the normal joys and trials that go along with it.
I look at the things that give my life meaning. My art: writing, acting, teaching. I'm a dreamer and a performer. I'm a person who writes curricula and inspires teenagers to find their voices through writing. I do community arts projects. Those parts of my life have become bigger and more important over time. As I've gotten healthier, I've been able to plunge myself even deeper into my art, and into other people. They get to know me before knowing about my HIV status. They see me for all that I am. The way I see myself. Because I'm so much more than my diagnosis.
From: Esquire US