At 21, Ellie received routine blood test results. She thought her life was over.

Ellie Harrison was at a university party when she started chatting to one of her classmates. They were celebrating the start of the school year, the third and final of their degree. 

When the classmate led her to his room, away from the thrum of the party, Ellie welcomed the chance to properly catch up. But then he leaned in to kiss her.

The feelings that overwhelmed Ellie at that moment were dark: panic, fear, shame. Words came tumbling out of her mouth, words she had only said to a handful of people prior.

"I'm really sorry. I've just been told I'm HIV-positive."

Then she ran.

That was in 2018. In the years since, Ellie has spoken about her diagnosis many times. Not only with other potential partners, but with friends, family, and colleagues. She's also a prominent voice in the media, courtesy of her advocacy work for various charitable organisations in the UK and abroad.

Those dark feelings about her HIV status are gone. But faced with persistent stigma, Ellie knows it's a conversation she needs to keep having.

Listen to the full interview of Ellie Harrison on No Filter. Post continues after audio.

The day Ellie learnt she was HIV-positive.

Ellie was 21 years old when she was diagnosed with human immunodeficiency virus, more commonly known as HIV.

HIV is a virus that can be transmitted via semen, vaginal fluid, blood and breast milk. It attacks the body's immune system, making it harder for the sufferer to fight off other illnesses, infections and some cancers. If left untreated for an extended period (typically years), it can develop into acquired immunodeficiency syndrome, knowns as AIDS.

At the end of 2023, an estimated 39.9 million people worldwide were living with HIV.

Speaking to Mamamia's No Filter podcast, Ellie said she contracted the virus amid "the best point" in her young life. She'd been working at a fashion company in London as part of her university studies before moving back to Birmingham to begin the final year of her degree in logistics and supply chain management.

Out of an abundance of caution, she took a routine at-home STI test. She had no symptoms and no cause for concern. A similar test a year earlier had been clear. 

This one, however, returned a positive result for HIV.

After a follow-up test at a clinic, Ellie was called in for an urgent appointment.

"I got taken to a waiting room and I had barely sat down by the time a nurse called my name," she said. "We had to walk down quite a long corridor to get to the room we were going to, and she kept looking back at me. It's that look where you're like, 'I know she's about to tell me something bad.'"

Ellie, now 28, said the diagnosis felt like the sky was falling in. She had panic attacks. She immediately bought beer and a packet of cigarettes (she wasn't usually a smoker) in an effort to numb herself.

"I was blindsided," she said. "I also never thought — and I think a lot of women think this — it could ever happen to me. I didn't know that HIV affected straight people because I was so incorrectly of the assumption that it was a gay [men's] disease."

In Australia, roughly 10 per cent of people living with HIV are women. In the UK, where Ellie lives, it's a little over 30 per cent. Yet the virus is underresearched in women, and they remain hugely underrepresented in public awareness campaigns.

Little wonder then that Ellie felt so scared of her diagnosis.

What she didn't understand at the time was that, courtesy of daily antiretroviral medication (ART), she would soon be living a normal, healthy life. Roughly nine in ten people who take ART end up with a viral load so low it is deemed undetectable within 12 months. Ellie was among them. 

Undetectable HIV is also untransmittable after a period of six months. That means Ellie can have normal sexual relationships, she can have children, and she can breastfeed, all without passing on the virus.

Her peers didn't understand that either.

After confiding in a small group of friends, as well as the classmate who wanted to sleep with her at the university party, the news of Ellie's diagnosis somehow spread around campus. Ellie said some people were scared to share drinks with her or even sit next to her. Others smothered her with unwelcome pity.

"I felt like I couldn't walk anywhere without people staring at me," she said. "They weren't saying, 'Ellie can't pass it on. She's doing so well. It's been eight months.' They were saying, 'Ellie's got an STI. Ellie's got AIDS.'"

As awful as it was to have people talking about her diagnosis, Ellie said it was also freeing. The secrecy had felt isolating and heavy.

"I'd always admired people that spoke about HIV," she said. "And the first day I got diagnosed, my dad said, 'One day she will scream this from the rooftops.' So for World AIDS Day in 2021, I made the decision to put a video on YouTube."

It was a simple, heartfelt clip in which she spoke about her story. The positive response led her to speak out more and to partner with charities, including the UK's Terrence Higgins Trust. As well as holding a corporate job in the fashion industry, she also works to advocate for HIV awareness and improved access to treatment.

Watch: A snippet of Ellie's YouTube video where she shares her HIV story. Post continues after video.

"It thrust me into this world where I was having the conversation almost daily, and having that conversation was almost cathartic because I was able to say things that I never said before, or discuss aspects of HIV that I hadn't had the opportunity to speak about," she said.

Ellie on what dating is like with HIV.

Unfortunately, Ellie's advocacy work has had repercussions for her dating life. As she often promotes the cause on social media, many prospective partners learn of her diagnosis before properly getting to know her — and she said most write her off as a result.

"In order for me to have got HIV at 21, I must have had sex with every man on the planet, right? That's the immediate assumption that most people make. It isn't true," she said. "[They assume] I must have done something to deserve this."

Ellie knows that it comes from a place of ignorance and from fear they will contract the virus from her.

"What people don't realise is [someone with undetectable HIV] is one of the safest people to have sex with, because they know they have HIV, and therefore they're on meds, and they can't pass it on," she said. 

Meanwhile… "There are so many people that don't know when their last test was. Many have never been tested for HIV, let alone any other STI, but you would happily have sex with them on a night out."

And so, she's been mostly single since her diagnosis, with the exception of a recent three-month relationship.

"I was spun away by the magic of love and fantasticness," she said. "I can be emotionally weak because I've come from a place of being ghosted and ignored, but that level of intense affection is empowering to me. And [I thought], Oh my God, this is it; this is my Prince Charming."

Ellie said the breakup came out of nowhere.

"He dumped me on World AIDS Day," she said. "I was about to do a talk in front of 300 people, and he rang me to dump me, so I had to cancel."

Still, she remains positive about her future, whether or not it contains a partner. She hopes it features children; she'd love to adopt or foster kids with HIV.

"The thought of getting married and the thought of having a foster home with 30 children gives me the same energy," she said. "So I don't know what path I'm going to go on, but I know that there are options either way."

While she wouldn't wish her experience on anyone — "it was a very horrific, traumatic thing" — it has lent her a welcome new perspective on life, one she hopes a future partner would share.

"HIV gave me a presentness that I never knew existed," she said. 

"I think I want someone that can get in that moment with me, and not someone that turns up and goes, 'Oh, I've had a horrible day at work. I feel awful.' I want someone to go, 'Let's just put it down and have fun and embrace today.' Because tomorrow is a gift, not a promise."

Read more about sexual health:

• Dear Doctor: 'I'm 58, dating, and heard STIs are on the rise in over-50s. What do I need to know?'

• A GP and a mum on why young people are avoiding STI tests.

• 'I did it in my work lunch break.' 13 people share the first sexual health test they ever had.

Feature image: Supplied.