“I Thought ‘I’m Not Someone Who Gets HIV'”: Young Women On Their Diagnosis

“I felt like I was a lesser person. I felt like I was dirty. I felt like I deserved it somehow.” Victoria Roscow, 30 and from Manchester, UK, learned of her positive HIV status three years ago while nine weeks pregnant with her first child. The news came after a standard blood test during a baby scan appointment, so she could have been carrying it for years since her last test. “I thought my world had ended,” she says. “I thought my baby and I were going to die. My husband [who doesn’t have HIV] and I sat in shock together.” She burst into tears, confused and scared and shamed. Roscow then started sharing her story on TikTok as she processed it for herself. “A big part of working through those feelings was making TikToks about my HIV status and to reaffirm what HIV actually is — a treatable chronic illness. I think as women we are often left out of the picture when we, as society, think about who is affected by HIV. So when we are diagnosed, it comes as an even bigger shock. I thought ‘I'm not someone who gets HIV’, but the truth is everyone is affected by HIV.”

In the U.S., the latest figures show that 18% of new diagnoses of HIV are in women, with 54% of this group identified, disproportionately, as Black. Researchers estimated that under Republican rule between 2017 and 2021, there were 360,000 new HIV infections due to restricted funding worldwide for abortion-related activities under the “Mexico City Policy” — a worrying figure given Donald Trump’s second presidency has now begun. Just last week, Sky News reported that HIV treatment is at risk in South Africa due to Trump freezing foreign aid for 90 days. 

Across the UK in 2022, 36.4% of new HIV diagnoses were in women. In the UK, it’s currently HIV Testing Week, a government drive to encourage people to take free tests, as part of a wider aim to end new HIV diagnoses in England from 2030. We are still some way off, as YouGov found more than 80% of adults in England don’t know they can test for HIV at home. In England in 2023, 28% of all new diagnoses occurred via transmission from men to women, and 22% occurred via women to men. Men are most likely to transmit to women too in the US. And yet UK data shows that women are less likely to get tested for HIV than men, and their testing uptake has concerningly decreased between 2019 and 2023. “[At a clinician level] women are not being offered standard HIV testing or prevention that is in line with the proportion of new diagnoses among this demographic,” says Annie Howard, National AIDS Trust’s policy and research manager. 

Less testing means fewer diagnoses, which means reduced treatment of this chronic disease. The UK-based charity’s 'Not PrEPared' report uncovered that no local authority surveyed had more than five women receiving PrEP (the HIV prevention drug which reduces the risk of transmission). Still in 2025, public perception of HIV is still heavily weighted towards gay men, meaning it isn’t front of mind when diagnosing women. “Women's needs are unique and nuanced, and they have a multitude of experiences that might impact how they feel about HIV — including but not limited to: gender roles, cultural beliefs, gender-based violence, imbalanced powder dynamics, and pregnancy,” Howard says. 

When we look at women and minority groups, shame, stigma, and a lack of education on HIV still very much exists. When thinking back to her first conversation with a doctor about HIV, Roscow remembers how the room spun. “I remember my husband silently reaching over, grabbing my hands and holding them. It felt like at that moment he was saying 'Don't worry, we're in this together'. And we have been ever since.” In the days that followed, there were more blood tests, education about HIV and treatment. Three weeks into treatment, Roscow was undetectable, which means she cannot transmit the virus to anyone. This news “blew” Roscow’s mind — she had no idea that was possible. Her baby was born HIV-negative. With time, she’s found sharing her HIV story empowering. It’s helped her reevaluate what matters and she now has a “much more positive outlook on life”.

Many women with HIV don’t have that same positive outlook. The UK government’s Positive Voices report, examining the lives of people with HIV living in Britain, found that awareness of the concept U=U (undetectable=untransmittable, meaning treatment has made the virus undetectable in someone), was lowest among women across all demographics. Knowing about U=U also made around 8% more men feel better about their HIV status than women. More women than men were afraid to attend healthcare services “due to concern that someone may learn their HIV status”. Self-stigma was most prevalent among Black and trans people, and discrimination was experienced more commonly by women, young people and trans and non-binary people within their social circles. 

In New York, Bianca Ordoñez, 31, fought hard for her diagnosis. And then fought even harder to accept it. In March 2019, she did a routine sexual health test — as she did every four to six months — and all was clear. The next day, she tells Refinery29, following a night out during which she was drinking, she woke up with a man, without much memory, and panicked. Ordoñez quizzed him, asking about his sexual health and the details of the night before. He assured her everything was fine, which turned out to be false. A month later, she got ill. Her lymph nodes were swollen, it was hard to swallow, she began vomiting and had diarrhoea. She went to hospital and was tested for “everything but HIV”, including pregnancy and STIs. She believes she wasn’t tested for HIV because of her gender. Ordoñez was then told: “You have a viral infection and you have to let whatever virus it is run its course.” Then a yeast infection developed and she went to a free sexual health clinic for help. There they did a routine screening for everything, including a rapid HIV test, then called her back quickly. Ordoñez broke down. “I didn't want to leave the clinic because I felt like once I left, it would actually be real. They said ‘Bianca you have to leave, you know we're closing’.”

Turbulent is how Ordoñez describes the months that followed. In some ways, knowing was a relief as HIV explained her mysterious illness. But she felt she’d lost her identity. “The only thing that mattered was the fact that I was HIV-positive. There was life before HIV and after HIV, and I knew that I was never going to be the same person that I was before I got diagnosed for better or worse.” From what she’s experienced, although she would raise sexual health with new partners typically before sex (both prior to being diagnosed with HIV and since), men would view the conversation as “an inconvenience and a mood kill”. Ordoñez started asking herself: Where do I go now? Who am I? Is anyone going to love me? What if people find out?

Those working on the frontlines are keen to make sure the varying experiences of women, of all intersectionalities, are better understood. Howard tells R29: “I do think there is an attitude among heterosexual and bisexual women that HIV isn't something that will impact them”. She adds there’s “little information about the needs and interventions surrounding lesbians and bisexual women”, too, affecting how represented these factions of society feel when we talk about HIV. Asia Sullivan, a medical practitioner who advocates for better education around HIV in the U.S., thinks public perceptions of HIV often forget women. “Public messaging has largely targeted gay men since the start of the epidemic, but as the data shows, HIV is not uncommon among women,” Sullivan says. “Healthcare providers may sometimes overlook HIV testing in women, underestimating their risk. I think primary care providers, urgent care and emergency providers, and OB-GYNs need to become more comfortable talking to women about this.” She encourages women to get tested regularly, every three to six months.

Like Roscow, Ordoñez started documenting her experience living with HIV and began to address her low self esteem she’d experienced before her diagnosis. She started dating again. The first man she dated blocked her after she told him, and said “don’t worry I’m not going to tell anyone” before disappearing. This triggered something in Ordoñez, confronting the shame she’d been carrying. “I didn’t want my HIV status to mean to me what it might mean for everyone else,” she recalls. “I realized I’m not going to live my life in the shadows wondering who will find out. That is exhausting. I’d never been rejected for something that was out of my control before, so I felt very proud for showing up for myself.” Today, she is happily married and has a child. Both members of her family are HIV-negative, and although her spouse didn’t know what U=U meant when they met, he did his research and moved forward with their relationship. “Disclosure doesn’t mean you’ll be accepted, and you don’t disclose to be accepted,” Ordoñez adds. “You disclose because you are fully accepting of yourself.”

For Roscow, Cognitive Behavioural Therapy helped her reframe her diagnosis. “I worked through the shame I had, rather than bottling it up. For anyone diagnosed with HIV, but particularly young women, don't let your HIV status define you. It doesn't change who you are. It doesn't make you less of a person. And it doesn't mean you can't live a full, happy, healthy life.”

Dr. Babak Ashrafi, from Superdrug Online Doctor, says symptoms can include:

- Flu — things like fever, fatigue, sore throat, swollen lymph nodes, and muscle aches — two to four weeks after exposure. 
- Night sweats, which can drench your clothes and sheets.
- Persistent vaginal infections, like bacterial vaginosis or yeast infections, and recurring UTIs, due to a weakened immune system.
- Menstrual irregularities or pelvic pain.
- Unexplained weight loss, chronic diarrhoea, or persistent headaches.
- Neurological changes, such as difficulty concentrating or memory problems, might develop.
- Skin issues, like prolonged eczema or psoriasis.

These symptoms can overlap with other conditions, so testing is crucial if there's a risk of HIV exposure.