What's It Like to Live With AIDS? Three HIV-Positive Women Share Their Stories

"The stigma surrounding HIV/AIDS is debilitating...” In honor of World AIDS Day, we'd like to introduce you to three fearless and inspiring women.
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Meet Dawn Trook:

Dawn Trook“AIDS is not over. It’s living and breathing in me.”

Dawn Trook is a 45-year-old university professor and writer living in California. Diagnosed with HIV at the age of 32, she makes a daily effort to educate others about AIDS.

How has your diagnosis changed you?

It has made me, during times I’m feeling well, run at full throttle speed through life, trying to do as much as I can–I went kayaking and skydiving last summer. When I first was diagnosed, I started doing a lot of solo performance art that dealt with the diagnosis. I just didn’t want to spend any time doing anything that I didn’t love to do, because I knew my time on earth might be limited. As I’ve felt steadier with my health, I’ve started changing this approach–making more long range plans (while still focusing on plans that involve living my dreams), and doing things that are means to an end. I think most people think of me as someone who continues to embrace life with as much force as I can muster.

I think, while I’m in this body, what can I do with it? I just took up bass guitar a few years ago and played with a rock band for a while. Now I take voice lessons, acting lessons, write, teach, and try to be of service to my community. But there’s also this underlying fear, or hurry, as a result of the diagnosis. Like if I don’t feel well, I get more afraid than others might get, or I’m always worried I won’t have enough time to do the things I want to do in the world.

How did your family and friends react to your diagnosis?

My family has been very supportive as have the majority of my friends. There are always seasons and friends who don’t deal with it that well, either because of feeling overwhelmed or sad or ignorant. Some new friends fall away when they find out about the diagnosis, but I’ve come to think of it like a friend sieve. I’m now living in the Central Valley of California where it’s very conservative, so I’m much more confidential about disclosure than I used to be.

How do those outside of your inner circle react when you disclose your diagnosis?

My best story about this was when I was living in a town of 2,424 in far West Texas — Marfa — and I accidentally disclosed on the radio station on World AIDS Day at a reading I was hosting. I forgot we were on the radio. The whole town started acting kind to me after that, and when I went on the meds and was sick from them for a while, the Nurse Practitioner in town took a list of my friends and acquaintances and arranged for someone to bring me food and clean up for me for as long as I needed. I feel like this disease, more often than I’ve seen the ignorance, has let me seen the love and kindness of others. People just have been super generous and helpful to me.

How has AIDS affected your romantic relationships?

It’s hard to know, because people are rarely honest about that. The first guy I tried to date after my fiancée and I split said, ‘What were you thinking? Did you really think I’d be with you?’ and one male friend said it would be an issue for him — and another guy said it was too much information. But it’s often softened guys towards me and I’ve had some really lovely moments of disclosure and some really lovely romances since the diagnosis, much better than the ones before. However, that getting ready to disclose time is a scary time! It’s scary enough when you like a guy, without the added pressure of, ‘Oh, and if you have sex with me, you could die…’ which of course isn’t really true because transmission from female to male is so rare and because treatment is so good these days. But it’s always in the back of my mind, even if my partners have said it’s not in the back of their minds.

Do people treat you differently because you have AIDS?

Mostly, people have been nicer, but when they aren’t — and this happened recently, when someone was kind of bowled over by the news, I’ve felt alternately hurt or a bit miffed. I mean, in 2011, still people don’t understand the disease? Sometimes, we’ve made jokes about it — like a friend and I were sharing a bag of chips and then he got really serious and said, ‘Oh, no, am I going to get AIDS now?’ and then he laughed and I laughed. Laughter and my own matter-of-factness in terms of my approach about it have helped even out other people’s responses, though it still feels like I’m the one who is sick and I have to be the caretaker.

What is the hardest part of living with AIDS?

Disclosing to men I’m really attracted to. Yep, that’s been the hardest thing, the most anxiety-provoking — but romance is hard and important for me anyway. I kind of wish that people would tell me if the AIDS is a factor when they aren’t interested because I would feel much more relieved–because AIDS is something I can’t do anything about. Otherwise, if I like a guy and he doesn’t seem to show interest, and he knows I have AIDS, I always wonder, what is it about me, is it the AIDS? There’s been a couple of looks on friends faces — or a gasp on the phone — that I’ll never forget, but in those instances those friends were awesome to me afterwards.

In which ways do you take a stand for those who have HIV or AIDS?

I think being free about sharing my diagnosis is the way I take a stand. Choosing to live and to love is taking a stand. That guy who said, ‘What were you thinking?’ — I’m showing him, I’m thinking everyone has a cross to bear or some disease that strikes them or some skeleton in the closet, and I’m opening my closet and saying, yes, there’s this, but there’s also life. I’m living my life. I write about it in poems and short stories. I don’t tell as many people as I used to because I live in a conservative place and I also learned, as I got older, that I it would make people uncomfortable. Maybe I’ve been too worried about people being uncomfortable. Maybe it’s time to start telling again. I used to want to be on a billboard with the words ‘I have AIDS’ on it. I’m healthy looking, strong looking, attractive. I’m intelligent and teach at a university. I don’t fit the stereotype. I’d love to do more to break down the stereotypes. I just haven’t found the forum yet.

Your biggest fear:

Dying without doing all the things I dream of doing.

What do you want most out of life?

Loving, human, sustained romantic partnership or marriage.

What’s something you wish everyone knew about people who are living with AIDS?

We’re not who you think we are. AIDS doesn’t strike just one “element” in your neighborhood. Also, I wish everyone knew the kind of fear I live with, fear of being rejected, fear of dying before my time. I also wish everyone would stop being so homophobic; I really think that since homosexuality and AIDS have been so associated with each other, that people are afraid to get tested or afraid to get treated. It’s often because of this that people still die. Also, I want everyone to know that people are still dying of AIDS. Some people are dying because they aren’t in treatment, some people are dying who have been in treatment for a long time and it could be the long term side-effects of the drugs that are killing them. AIDS is not over. It’s living and breathing in me.

What would you tell women and girls who have just been diagnosed with HIV?

Embrace your sexuality. This does not make you untouchable! It can make you very precious to the right person. Because if we live, we are survivors and there’s something really strong and attractive about that.

Anything else you want to share with our readers?

I’ve been living with HIV for 13 years and it took about 10 years to get used to it. I remember I used to think about it constantly, and then one day, I didn’t think about it every hour, and then one day, I didn’t think about it every day. Now, I really think about it when I’m sick with something (thinking it might be my immune system failing again, because I really resisted taking meds and my immune system got very depleted), and when I’m in a romantic relationship, when I’m worried about disclosing or infecting the other person.


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10 thoughts on “What's It Like to Live With AIDS? Three HIV-Positive Women Share Their Stories

  1. rgsudul says:

    Awesome. Until there’s a cure prevention is paramount. Women need to get more comfortable with carrying their own condoms and taking control of their sexual health. My mom and I created a product so women can carry their own protection- so that they KNOW they have been stored safely, they aren’t expired or compromised in any way. They are called Just In Case compacts and we are donating 50% of our online retail sales to MTV’s Staying Alive Foundation for the month of December. We believe in what they are doing and the conversation that they are igniting with young adults. Thank you for this article and highlighting these amazing women.

  2. festivelady826 says:

    Many thanks to Betty Confidential and to these three fabulous ladies for sharing their difficult stories on this important day.
    Please believe me when I second their statements that we are your next-door neighbors, your friends, and your ministers – and we are living with HIV/AIDS and living well.
    It is ignorant and irresponsible to think because you are white and heterosexual, you cannot be infected. We should all be fighting to eradicate this disease and to educate our children.
    I do not want to make another square to add to the 94,000 that are on the quilt – and you shouldn’t either.
    And “rgsudul” – you and your mom ROCK ON!!

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