'No one is listening to me' - Irish nurse with HIV told by doctors she had cancer

Aoife Commins is a 30-year-old nurse who is living with HIV and is bravely sharing her story as a way to debunk the stigma surrounding the virus.

According to the World Health Organisation (WHO), there was an estimated 40.8 million people living with HIV at the end of 2024.

However, Aoife is one of few who are bravely open about their diagnosis because many are scared of people judging them or perceiving them wrongly.

While there is no cure for HIV infection, with access to effective HIV prevention, diagnosis, treatment and care, including for opportunistic infections, HIV infection has become a manageable chronic health condition, enabling people living with HIV to lead long and healthy lives, WHO says.

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Human immunodeficiency virus, HIV, is a virus that attacks the body’s immune system and is spread from the body fluids of an infected person, including blood, breast milk, semen and vaginal fluids.

The signs and symptoms of HIV vary depending on the stage of infection. It spreads more easily in the first few months after a person is infected, but many are unaware of their status until the later stages.

In the first few weeks after being infected people may not experience symptoms. Others may have an influenza-like illness including:

• fever
• headache
• rash
• sore throat.

For Aoife from Galway was living in Australia at the time she was diagnosed with HIV. She was dating her ex-boyfriend for around six weeks. He had HIV but didn't realise it. He tested negative in his early stages.

Aoife recalled that time in her life as very frightening for them and despite the doctors denying she too had HIV, she was sure she had contracted the virus.

The doctors told her to take post exposure prophylaxis (PEP) for four weeks which is given within 72 hours of exposure, but she was outside the 72 hours since her and her boyfriend had unprotected sex.

During this time, Aoife was experiencing health issues like mouth ulcers, thrush and a really sore throat.

"I was just really run down and I couldn't tell if it was because I was stressed or if it was actually the HIV starting to kick in.

"And I remember when I got thrush, I'd never had thrush before. And I Googled it being like, cause of thrush and they came up with HIV. And I knew then that the medication hadn't worked, but I had to finish it anyways".

Aoife said that she was incorrectly tested for HIV after the PEP was finished.

"You're supposed to get tested six weeks after exposure but they tested me too soon. It's six weeks after finishing the PEP. They just tested me too soon so when I actually got my blood test, they told me I was negative. And I just didn't believe it."

"The window period for HIV is 45 days and 90 days for exposure for syphilis and hepatitis. So I'd read online to get tested after three months."

But when Aoife asked if she should come back and get tested again she was told that she shouldn't because there was no need.

"Two weeks later, I started to become really, really unwell, it started with back pain. I couldn't really sit still at all.

"I was in so much pain so I was going to a chiropractor, I was going to physio and they didn't really know what was going on. It was just getting worse."

"I was getting really bad fevers then too, I started spiking fevers and just felt really run down. And I had gotten a COVID test and it was negative. So I was like, okay, something's really going on here."

A doctor, who Aoife worked with at the time, thought she had an abscess in her spine and told her to go to A&E.

She explained in A&E that she was recently exposed to HIV but again it was shut down by doctors who didn't even test her for it. They told her it was probably glandular fever and sent her home but Aoife's health was getting worse as time went on.

"I couldn't do anything. I was just in so much pain. So my boyfriend at the time was like, all right, you need to go back into hospital.

"He brought me in. It was a Friday night and we went into A&E again. I'd broken out in a big rash. I just was like feeling miserable."

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Aoife's ex-boyfriend told her he had a rash too when he contracted HIV.

Again, doctors told Aoife it wasn't HIV and instead it could be cancer in her spine.

"She was like, 'no, no, I don't think it's HIV. I think that you've got a malignancy. I think you've cancer in your spine.'

"I want you to go for an MRI as an outpatient. Again, they wouldn't test me for HIV in the hospital and they sent me home".

Aoife continued to get worse and worse to the point where she wasn't able to eat or sleep or walk comfortably.

"At this point I really was convinced that I now had cancer. I went back into the hospital on the Sunday and I basically just started crying, crying, crying.

"And they were like, why are you so upset? And I was like, because no one is listening to me and I'm really scared. I think I have HIV, but I don't know."

At this point then Aoife's blood was taken and tested for HIV and it showed a positive result.

Aoife said that she let out a huge sigh of relief because she was so worried she had cancer and instead finally had confirmation it was indeed HIV.

This was a really tough period in Aoife's life, especially while living apart from her family. 

Her boyfriend at the time told her to keep their diagnosis a secret and told her not to tell her family or friends even though Aoife wanted to.

It was only when Aoife went back to Ireland that her mother found out after she discovered her HIV medication.

"She confronted me, but not in an aggressive way. I told her everything and we went for a walk. I just remember it being such a lovely day.

"I just remember her being really, really good. She was really calm and she asked lots of really good questions."

Aoife's father was worried and confused, asking Aoife 'how did this happen, I always educated you guys on safe sex all these years?'.

But once Aoife explained that she can't pass on HIV to anyone else, she can still have children and nothing in her life is changed, he realised it was all ok.

Aoife has since been on TV, radio, in newspapers and even on The Tommy Tiernan Show on RTE, sharing her incredible story and fighting against the stigma surrounding HIV.

Aoife said she had a massive amount of encouragement and support from people in her community and beyond since sharing her story and HIV diagnosis.

It was like my whole world changed. I shared my story and my phone blew up. My mum and dad's phones blew up. Like it was incredible.

"And mum and dad said that like they got the most amazing messages from family, friends, neighbours, just saying like, wow, your daughter's so brave."

Aoife, working in a hospital, shares her knowledge and help with people on STDs and HIV and shows people that you can have HIV and live a completely normal life.