Living With HIV As A Young Woman

Shauna (26) was diagnosed with Human Immunodeficiency Virus (HIV) in 2021 – since her diagnosis, she has been using her platform on TikTok to raise awareness and educate others on the reality of living with HIV today. 

According to the Terrence Higgins Trust and Sophia Forum, women make up one third of people living with HIV in the UK, yet are often forgotten about when it comes to research, decision-making and service design and delivery. Almost half (45%) of women living with HIV in the UK live below the poverty line and nearly one third (31%) have avoided or delayed attending healthcare in the past year due to fear of discrimination. For years the numbers of new diagnoses of HIV have been steadily declining but in 2021, cases of HIV rose for the first time since 2014 due to public health cuts.

It’s also estimated that over half of women living with HIV in the UK have experienced violence because of their HIV status.

Speaking to GLAMOUR, Shauna sets the record straight about what it’s actually like to be a young woman who lives with HIV. 

TW: This article contains a reference to attempted suicide. 

I never learned much about HIV in school – it never occurred to me that I might one day be diagnosed with it. But about a year ago, at the age of 26, that’s exactly what happened. 

When I realised I’d potentially been exposed to the virus, I panicked and booked an appointment at the sexual health clinic. I got tested and there it was: I was HIV positive. 

Shortly after I found out, I tried to kill myself. I felt like the worst person in the world. I felt dirty and disgusting. Thankfully, the Terrence Higgins Trust’s support groups helped me learn that HIV is manageable and that people living with the virus can live long and fulfilling lives.

A year later, I’m now on effective HIV treatment which means the virus is now undetectable in my blood and I can’t pass it on to partners.

I’ve tried dating since my diagnosis but it’s hard. Because I’m ‘undetectable’ and definitely can’t pass on HIV, I don’t need to tell anyone about it– it’s a personal choice. One guy I was dating found out that I had HIV and he was horrible about it. He was abusive, calling me ‘disgusting’ and asking how I’d contracted it. 

He threatened to tell everyone I knew – so I panicked and thought well, I can’t have someone going around telling people I have HIV, I’d rather be open and honest about it myself. I wrote on social media about what had happened to me and found myself raising awareness of what it’s like to be a young woman with HIV. If he hadn’t threatened to tell people I would never have gone public – I would have kept it to myself. 

I now use my TikTok account to educate others on the reality of HIV today. A lot of people have perceptions of HIV that are stuck in the 1980s and I share my experience and story to show how much has changed since then. I’m not saying being diagnosed with HIV is easy, but with the right support, it doesn’t have to stand in the way of achieving anything you want to do.