I was diagnosed with HIV at 21 – I feared I’d die and felt filthy, men ghost me but it’s the best thing that’s happened
A WOMAN has revealed what it is like living with HIV after a devastating diagnosis when she was just 21 at university.
Ellie Harrison, 28, from Manchester, explained that she was in a long-term relationship at the time, but her world was quickly turned upside down by an at-home STI test.
Speaking on a recent podcast episode of Should I Delete That?, with Alex Light and Emily Clarkson, Ellie shared all on how HIV (Human Immunodeficiency Virus) transformed her world.
Ellie claimed that prior to her diagnosis, she had no symptoms and was going out clubbing four times a week.
However, when she was told she had the virus, which attacks the body’s immune system, making it harder to fight off infections and illnesses, she went into full panic mode and believed she was going to die.
Not only did she feel ‘filthy’ and ‘dirty’ about her diagnosis of HIV, which is spread through contact with an infected person’s body fluids, but it made dating a real challenge.
Whilst many men ghosted her after she shared her health status, others would simply refuse to kiss her when on dates.
But now, six years later, Ellie is an activist and a force for change, keen to raise awareness and break the harmful misconceptions many people hold about HIV.
Speaking on the podcast, the HIV campaigner bravely opened up about her diagnosis, as she said: “I worked at ASOS, I was partying, I was having fun.
“I’d been in a long term relationship so I’d had a boyfriend for about a year and a half.
“I had to move back to Birmingham to finish my studies, and I thought our relationship would have a lot of strain – he was older than me, I just didn’t see how it was really going to work, so before we broke up I decided to get a home STI test.”
But whilst Ellie “didn’t expect anything” and “had no symptoms”, her life quickly changed in a way she could have never predicted.
After a ‘false positive’ for HIV, Ellie was asked to have a blood test, and just a week later, she got a phone call that made her shiver.
She added: “A week later they called me and said to come in now so I didn’t really need to be told what was about to happen to figure out I was to be told I was HIV positive.
“I was shocked. I never in my wildest dreams would have imagined I could have caught HIV.
I felt like the sky had fallen but no-one else could see it
Ellie Harrison
“I was 21, I was going through a lot and I think mentally I was on a very steep, downhill spiral. I didn’t want people around me, I kind of wanted to wallow a little bit.
“I thought I was going to die. I thought it was a death sentence.
“I rang my mum and dad immediately. They talked me through everything.
“They took me to a Wetherspoons, I was necking pints of Guiness and I don’t smoke but I was having 20 fags.
“I felt like the sky had fallen but no-one else could see it. Everyone else was carrying on and life was normal and I was there like, I feel like my life is over and no-one else has noticed it.”
Are you at risk of HIV?
HIV is a virus that damages the cells in your immune system and weakens your ability to fight everyday infections and disease.
An estimated 106,890 people are living with the condition in the UK.
In most cases, it spreads through unprotected sexual contact with an infected person.
Most people will experience flu-like symptoms two to six weeks after being infected.
This tends to include a sore throat, fever and a rash all over the body, which lasts one to two weeks.
After this, HIV may not cause any symptoms at all, but the virus continues to damage your immune system.
Some people go on to experience weight loss, night sweats, thrush in the mouth, an increase in herpes or cold sore outbreaks, swollen glands in the groin, neck or armpit, long-lasting diarrhoea, and tiredness.
While there is no cure for HIV, there are very effective treatments that enable most people with the virus to live long and healthy lives.
Medication now reduces the amount of the virus in the body to the point of being undetectable, meaning it cannot be transmitted.
The only way to find out if you have HIV is to have a test. This involves giving a sample of your blood or saliva.
The most effective ways to prevent or reduce the risk of infection include using a condom for sex, post-exposure prophylaxis, pre-exposure prophylaxis, treatment for HIV to reduce the viral load to be undetectable, and never sharing needles or other injecting equipment, including syringes, spoons or swabs.
Source: NHS
Ellie shared that the referral process moved fast, as she admitted: “On the Monday I got told I had HIV, by the Tuesday I was in the HIV clinic and by Wednesday I had medication. It was rapid.”
But for this blonde beauty, her CD4 (cluster of differentiation 4) level was extremely low.
CD4 is a glycoprotein found on the surface of immune cells that helps fight infection, as she shared: “A normal person’s CD4 count is between about 1,000 and 1,600.
“Back in the 80s, if it dropped below 200 it’s what they called AIDS.
When I got diagnosed so I was probably three or four weeks off of being hospitalised and I had no idea
Ellie Harrison
“Now AIDS technically really doesn’t exist in the UK because the medication is so advanced, but 200 was the benchmark, if you dropped below that, you were in trouble.
“I was at 84 when I got diagnosed so I was probably three or four weeks off of being hospitalised and I had no idea.”
In 2023, it was reported that 53% of the 39.9 million people living with HIV globally were women and girls.
In the UK, women make up one third of people living with HIV.
Ellie explained that she was devastated by her diagnosis and even suffered horrendous side effects from the medication.
She confessed: “I think one of the doctors took pity on how devastated I was. I was crying under a table in a hospital room.
I felt filthy, I felt so dirty
Ellie Harrison
“When I started the medication, my skin blistered really badly, all over my face was bright red blisters and it didn’t lift for about four months. It was awful. It was a really obvious side effect.
“It was because my immune system was so low, my body was trying to fight it off.”
And telling people the news didn’t come easy for Elllie, as she recalled: “I’ve had HIV for six years. The first three years I was very quiet about it to an extent.
“I didn’t tell anyone other than my mum, my dad and my best friend, for about a month.
“I felt filthy, I felt so dirty.”
Ellie didn’t go to any support groups, but in her final year of university, made the decision to open up publicly about living with HIV.
Whilst she was shielding at her parents’ house during the Coronavirus pandemic, she explained: “I filmed a video to put on YouTube. There’s so many people that didn’t know. It was hard to cover up the lies, I couldn’t remember what I’d told people or excuses I’d made for doctors appointments.
“It was getting hard to manage. So I just put it on my personal Facebook. The response was that great I moved it to YouTube.
“From that I really started on quite aggressive activism at some points.
“It’s so taboo and people don’t want to talk about it. They’re really scared and I was too.”
But whilst Ellie’s mindset towards her diagnosis has shifted throughout the years, it has made her dating life somewhat of a challenge, as she explained: “I had a big ‘why me?’ complex. That was a lot of my trauma at the time.
“I’m better at dealing with it now. I used to cry when I told men, it was awful.
Is there a cure for HIV?
HIV is a virus that, left untreated, can weaken the immune system.
It’s quick and easy to get checked for HIV.
Blood tests can be done at a sexual health clinic, an HIV testing centre or with your GP – or you can order a kit online.
No-one will be told the result of your test, unless you give permission – including your employer, family and partners.
Rapid finger tests will give results in 15 minutes, while blood samples at a testing centre will often take a day or week to come back.
The same goes for postal tests, which normally contact you a week later with your result.
There is currently no cure, but the effective medicines mean life expectancy for people who have HIV and are taking antiretrovirals is now no different to that of the general population.
However in July 2020 a Brazilian man, whose name was not released, was said to have been “cured of HIV” after an intense combination of drugs “flushed the virus from the body”.
In July 2017, doctors revealed that a nine-month-old child in South Africa had been “virtually cured” of HIV after he had been given a burst of treatment after birth.
At the end of 2018, researchers said a new “shock and kill” treatment has the ability to destroy even “invisible” levels of the virus.
In July 2019, researchers at Temple University in Philadelphia and the University of Nebraska claimed to have come up with a revolutionary gene-editing tool.
The team injected mice with human bone barrow to mimic the immune system and say they were able to eliminate HIV in nine of the 21 animals.
Each individual sufferer’s life expectancy depends on how early they were diagnosed and treated, their gender – and whether they smoke, drink or take drugs.
Antiretroviral treatment reduces a person’s viral load to undetectable levels – so they can no longer pass the virus on.
It works by stopping the virus reproducing in the body, and so reduces the level of HIV in a person’s blood.
Treatment is often called combination therapy, because people will take three drugs in one oral tablet.
Experts now recommend that everyone diagnosed with HIV starts treatment straight away.
Early diagnosis and treatment means people with HIV can expect to live as long as the rest of the population.
“Some people couldn’t care less and are very understanding. I’d say that’s 10 per cent.
“The other 90 per cent, sometimes I get ghosted straight away, which in the early days upset me but now it offends me more.
“The worst ones, I’ve been called some very horrific things on dates after telling them.
“I’ve had people refuse to kiss me after I’ve told them which is weird because you can’t catch it from kissing.”
Six years after her diagnosis, whilst Ellie recognises how much HIV has impacted her life, she described it as the ‘best thing that ever happened’.
HIV is the best thing that ever happened to me, it’s like an old friend now
Ellie Harrison
Now in a happy, new relationship, she reflected: “I have overcome some of the hardest things I think anyone would have to go through and I’ve done it in my opinion with such grace. I’m so proud of myself for being able to achieve that.
“There are definitely things that I’m learning about my relationship with HIV that I didn’t realise was a problem. So there’s still certain stigmas that really trigger me.
“90 per cent of the time, HIV is the best thing that ever happened to me, it’s like an old friend now.
“I’ve really got to understand it as a virus and I’m so much more empathetic than I was before, I’m so much more confident than I was before, it’s given me so much.
“However, it did take part of my life. For three years it was really dark.
“I’m still processing a lot of that grief. I lost a life, I had a boyfriend who I loved, I had a job that I loved, my whole life was at my feet and I was ready to go and then in a blink of an eye it was all gone.
“I’m now building something better for myself so I don’t have to deal with that pain.”