“What I Wish I’d Known About HIV”

Note from Nurx: National HIV Testing Day is Sunday, June 27th. Because women too often don’t realize they need regular HIV testing and doctors often don’t discuss HIV testing and prevention with cis women, we are sharing the story of a young woman living with HIV, in her own words. While she wishes to remain anonymous, she hopes that by sharing her story she will encourage other women to get tested regularly and take PrEP if they feel it’s right for them. 

In my early 20s, I was living what people might consider a laid-back, artistic life, but I was always responsible about my health. I went to the local women’s clinic multiple times a year and always asked to be tested for STDs. I had a long-term boyfriend and I was monogamous, but my partner was bisexual and I’d begun to suspect that he might be messing around. So, to be safe, I got tested for HIV and other STIs frequently, or so I thought.

No surprise, my boyfriend and I eventually broke up and I started dating somebody new, so I went to get tested again and learned . . that I had HIV. The medical providers at the clinic couldn’t believe it, they said “This must be wrong!” and they retested me—they were really flipping out about it. I said “I’ve only had one partner since I was tested last January” and they replied, “Um, you weren’t tested last January.” Turns out they had never tested me for HIV!  All those years they’d profiled me. I was an educated white woman with a boyfriend, and I guess they decided I wasn’t at risk of HIV and only needed to be checked for chlamydia or HPV or something.

It was surprising in a way how the doctors and nurses panicked — they were expecting me to panic, and I was more angry at first. They said, “Are you okay?” and I said, “I’m not okay! I have HIV and who knows for how long because you didn’t test me and didn’t even tell me you weren’t testing me. You didn’t consider me at risk, so you didn’t give me the care I was asking for.”

I left that clinic and thankfully found a wonderful HIV specialist, who now works at Nurx but was providing in-person care at the time. Despite my positive status I didn’t have a viral load, and still don’t to this day. HIV itself has caused me no problems from a health perspective. It’s an entirely manageable, long-term condition like any other. It’s less risky or complicated to manage than diabetes or other chronic conditions that don’t have stigma attached to them. 

Dating and Sex with HIV

The real problem for me is how HIV impacts my love and sex life. If I disclose to a partner right away they pretty much recoil — they act like their penis is going to fall off if I get too close. But if I wait until we’re falling for each other and getting serious they get angry that I didn’t tell them sooner. There’s no way to know the right time to tell my deepest secret to somebody, and it’s so hard afterward, to be two or three dates in and have a guy know this intense secret about me.

If I’m just having casual sex with somebody I don’t feel it’s necessary to disclose. My HIV is undetectable, which means I can’t transmit it to a partner, and I insist on condoms. I’m probably one of the safest people a guy can sleep with because I know my status and know I can’t give them anything. 

I did have a partner for a few years and he was cool with it at first, but when we started to have problems he retaliated and outed me to somebody and threatened to disclose my diagnosis to my parents. At first it was great that he accepted this side of me, but eventually he used it to hold power over me. I think I stayed with him longer than I should have simply because it felt too hard to find somebody new and disclose my HIV status again.

People suggest that I look for another HIV positive person to date, but sharing this diagnosis doesn’t mean we’re going to have anything else in common. That puts me in this category of people who shouldn’t be dating “regular” people, which is discriminatory.

In the gay community it is more understood that undetectable means untransmittable, and there isn’t the same fear of having sex with somebody who is positive. I have an HIV-positive friend who is gay and right after his diagnosis he found a great boyfriend who isn’t positive, and it hasn’t been an issue for them at all. 

But there’s a stigma around HIV-positive women, and people tend to think it means you’re a drug addict or a sex worker. But, like me, women often get HIV in relationships, when they aren’t using condoms because they think their partner is monogamous. I thought I did everything right but my partner and my healthcare providers let me down. 

I wish there wasn’t so much stigma. Somebody who knows their status and discloses that they’re positive is not a risky partner to have if they’re on medication. They have things under control.

To Disclose or Not To Disclose

The hardest part of HIV, exponentially, is disclosing, knowing who to disclose to, knowing when to disclose. I haven’t told my parents, simply because I don’t trust them not to tell our extended family. I am already this kind of unconventional boho person in my family and I don’t want to fuel that narrative. My sibling and my core group of chosen family knows. I’d say nobody who is positive should feel they have to tell anyone, but it’s good for your mental health to have a core group of people you talk to about it. 

When I do disclose my status, a person’s reaction tells me everything about the type of person I’m dealing with. Some people I’ve told are really uneducated about HIV, and while I want to be patient around lack of education it’s not on me to unpack your stigma. So, I wish more people were educated about HIV because that would make things easier for those of us who are positive. 

I’d like everyone to know that if someone discloses HIV positive status, they are saying that they really trust you and care about you and that is always a compliment, and that should always be met with empathy. Even though it shouldn’t, HIV can carry shame, and the right way to meet that shame is to meet it with empathy. Ask “How can I be a support in your life?”

What Others Can Learn From My Story

In retrospect, while I blame the people at my health clinic for not testing me for HIV, the truth is I needed more than frequent testing — I should have been on PrEP.  I realize now that what I was doing was like leaving all your luggage in your car in a crime-prone city and looking out the window often to make sure your car hasn’t been broken into. Just because you’re keeping an eye on a risk doesn’t mean you are preventing it from happening. Testing is important but it doesn’t prevent infection, and PrEP does. But PrEP was relatively new at the time so I didn’t really know about it and doctors probably wouldn’t have offered it to a woman like me anyway.

I should have listened to my instincts about the partner who gave me HIV. But I loved him, and I wanted to trust him. We were monogamous for years, and we were living together and making plans for a future together. I knew he was bi but he assured me that he wasn’t acting on it, that he didn’t need to sleep with men over the long term.  

Given my experience I am baffled by people who don’t wear condoms. I know a lot of my friends struggle with it in the moment — they freeze up, they don’t want the guy to get mad. It can be a vulnerable position especially if you’re not in your own home. My brother always uses condoms but tells me that his friends don’t  People need to normalize the conversation, and talk about it before sex starts. Use protection until you both feel like it’s time to make a commitment. Assume that there should be condom use until further notice. 

I’m sharing my story to remind people to use condoms, go on PrEP if you have any reason to think you should, and get tested. Although I want to stay anonymous now, as an artist I would like to be able to talk about my diagnosis openly to make an impact and make change, and I hope that someday I will.  

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