Ellie Harrison was in a long-term relationship that was coming to an end when she decided to do a home STI test before her final year of university. Not experiencing any symptoms, she thought it would come back all-clear. Here, she shares her story of being diagnosed and living with HIV, followed by expert advice.
“My knowledge of HIV was non-existent, it was awful,” says Manchester-based Ellie, now 27, but diagnosed at 21.
“I didn't know medication existed. So much of my story is self-stigma because my education was so poor. I thought it was always going to be this huge barrier, that no one I was friends with, or hung out with, would know anything about.
“It really is ironic. Getting diagnosed with HIV genuinely was the worst day of my life. I don’t think I’ve been that sad ever. But now it’s the best thing that has ever happened to me."
Getting diagnosed with HIV
After sending off her home STI test kit just before her last year of uni started, Ellie was contacted to retest for HIV, though she was reassured her chances were low, and it was likely a false positive. But, after being called back for another appointment, she received the diagnosis she was dreading.
“It was a double drop because I’d been given this false hope that I couldn’t get it,” she recalls.
She said: “I was going out, doing drugs, which meant I blamed the HIV side effects on drugs. Although I’d only had it for six months [she’s roughly worked out] and it shouldn’t have affected me that badly, because of my lifestyle, my CD4 cells [related to your immune system] were almost at the level where you can contract other diseases.
“I was really lucky I caught it because I was probably a few weeks off getting quite ill.”
“I'm a straight, white, young female, but a lot of people's understanding is that it’s just a gay disease, which it isn’t. People think it’s either contracted by having endless sexual partners or injecting drugs,” she says.
“There’s just this dirty word that gets thrown around. Or I get called a slag a lot.
“It’s not the disease itself that I get stigma towards, it’s the way people assume I contracted it."
I'm a straight, white, young female, but a lot of people's understanding is that it’s just a gay disease, which it isn’t.
The first few months
Ellie got medication two days after finding out she was HIV positive. "I always call it my magic pill. I can take it and be very confident I’m doing something to make myself better. I have taken one every day for five and a half years," she explains.
“It basically means I can’t pass it on and it’s almost like I don’t have it. Although I do, it sort of cancels it out.”
When Ellie returned to Uni after her diagnosis, she only told a couple of close friends.
“I was really depressed and upset, I didn't want people to know then. Unfortunately one of the people I told went on to tell my whole university," she recalls.
"They didn't say I had HIV but it was undetectable, more 'Ellie's got an STI and it's AIDS'."
In some ways, it was easier that everyone already knew, but when she left uni and entered the world of work, it became a secret again. She was scared it would affect her job, so, during the pandemic, her secret grew bigger.
Then in 2021, she filmed a YouTube video, which she received a lot of support from.
“I did the video for me to help get it out there again. I didn’t appreciate it was going to help other people,” she admits.
“I then started to get over my self-stigmas, where if someone rejected me, I thought I deserved it. Now, it’s pretty hard for me to hide it, because I’ve done so much activism and work.
Dating with HIV
“When I was first diagnosed, it was really hard. If I went on a date and someone didn’t accept my HIV status I took it personally,” says Ellie.
So now, she chooses to tell people early on, “I think it’s more out of protection for myself. I don’t ever want to be in a position where I start developing feelings and then get rejected for having HIV.
“But then also, the earlier you do it, the riskier it is because often people haven’t had the chance to get to know you as a person.
“Nine times out of 10 someone on Hinge is going to figure it out pretty quickly [because of her public activism].
“And there’s a lot of disbelief that U=U is even a thing [more on this from our experts later]. When I tell them I’m undetectable, meaning I can’t pass it on, most people think I’m lying. It’s so frustrating there’s such a disbelief in such a fantastic medical advancement.”
When I tell them I’m undetectable, meaning I can’t pass it on, most people think I’m lying.
How Ellie is now?
At the start, she was told she might have common infections like tonsillitis or thrush.
“But as soon as you start taking your medication,” explains Ellie, “as your viral load drops to being undetectable, your immune system will start climbing back up. So although I will never probably have an immune system quite as strong as someone who’s HIV negative, it can be almost as strong because it has zero effect on my life.
“I do a lot of public speaking now. It often looks to people that I’m 100% okay with it, I've solved all of my issues. But to this day, it's a very mentally tolling condition to have on the basis that the stigma and lack of education still exists.”
At times, she can get tired of feeling like a school teacher on a first date, explaining to someone she can’t pass it on.
She adds: “But my dad calls it a litmus test. If someone reacts really horribly, now I think you’re probably not worth my time anyway and it’s better to part ways.”
“I don’t know if I could have achieved what I have without being HIV positive. I’m still the same person, but it’s taught me so much about human empathy, how to be resilient and stand up. It’s given me a purpose in life. Get tested. There are two sides of the coin. Either you’re positive, and you’re starting a new journey and can get the correct medication and be healthy again. Or you’re negative, and can turn a new leaf on your sexual health and make sure it stays that way,” says Ellie.
What is HIV and AIDS?
HIV is a virus that attacks the immune system. It stays in the body for life, but treatment can keep the virus under control and the immune system healthy. Without medication, people with HIV can develop AIDS.
While AIDS is life-threatening, if HIV is caught early and is treated, it will not lead to AIDS, which is why it’s important to get tested early.
It is also possible to recover following AIDS diagnoses through treating the illness and taking HIV treatment to rebuild the immune system.
Who can get HIV?
“Anybody can acquire HIV,” says Daniel Fluskey, National AIDS Trust director of policy, research and Influencing.
“Some make the assumption that only gay men or people who inject drugs are at risk of HIV because these and other marginalised groups are disproportionately affected, but more than half of diagnoses are actually among heterosexual people.”
Most people experience a short flu-like illness two to six weeks after HIV infection, which lasts for a week or two
After these symptoms disappear, HIV may not cause any symptoms for many years, although the virus continues to damage your immune system
Many people with HIV do not know they're infected
“Unfortunately many people’s knowledge of HIV hasn’t progressed since the 80s and 90. HIV is just like any other virus. People should not be treated differently because of it and we all have a role to play in reducing HIV stigma,” says Fluskey.
“Not enough people are aware that if someone with HIV adheres to their medication, the levels of the virus in their body can be reduced to an undetectable level (Undetectable = Untransmissible, or U=U). This means that the person cannot pass the virus on to someone else through sexual contact.”
HIV treatment also prevents transmission from a pregnant mother to a baby.
“We found that many believe it can be passed in ways in which there is actually no risk, including standing on used needles, biting, spitting and even kissing. The main transmission risk of acquiring HIV is having sex without a condom.”
While condoms are one of the best ways to prevent yourself from contracting HIV, Fluskey adds, “However we also have the drug PrEP which stops you from acquiring the virus if you come into contact with it. PrEP is currently available for free from sexual health clinics.”
Early testing is key
“If the virus has had less time to progress it can massively improve longer term health outcomes. This is why initiatives such as routine opt-out testing in the emergency departments are so important,” says Fluskey.
Everyone is encouraged to know their status and get an HIV test, particularly if you’ve not taken one in a while.
Get a sexual health test from your GP or sexual health clinic. Or if you visit sh24.org.uk, you can order a sexual health testing kit [for HIV and other STIs) which arrives to your home in discreet packaging, then just pop back in the post for results within days.
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Watch: Billy Porter has 'survivor's guilt' for leading a full life with HIV