“My journey has given me this fire in my belly to fight for others”

I have been living with HIV for four years undetectable and regularly share my lived experience of HIV.

I come from an abusive childhood and have lived experienced with homelessness and navigating toxic and abusive relationships with men. I’m so grateful to be in a place now where I’m still here – having got past my struggles with mental health, living a healthy life and able to support other people with their HIV journey.

My Christmas Day diagnosis

In my mid 20s I found myself in a really dark place with my mental health. I came across a man that I met for sex, who was physically aggressive and did not respect my body or boundaries.

I felt worthless and became very ill. Five weeks later I’d lost an incredible amount of weight, and my gums were painful and swollen. I started to develop a rash all over my body and ended up going to the hospital.

In the hospital, they asked me if I’d had an HIV test. I was due to have one but hadn’t been tested recently. They did that as a final protective measure, alongside giving me antibiotics via a drip as I was unable to keep anything in my system. Then they sent me home.

On Christmas Day, I had a phone call asking me to go to the hospital, which I thought was unusual.

I left my dad in the car and walked into the hospital. It was empty because it was Christmas Day. The doctor called me in and that’s when I was told “I’m sorry to have to tell you this Mr Oakes but you have contracted HIV.”

I got back in the car and told my dad – he just completely broke down. I could tell he was very heartbroken and just didn’t know what to do. I think because he grew up in the 80s he really struggled with hearing that news.

I was referred to an HIV nurse who really incredibly explained everything to me. They told me the kind of medication I would be put on and that I would receive some mental health support to help moving forwards.

As I was starting to receive that help, my dad really pulled away and told me that he couldn’t support me anymore. That really hurt and I started spiraling to the point where I was drinking heavily. I attempted to take my own life on my 30^th birthday. It was only the next day when I spoke to a close friend that I realised something needed to change; I had to get sober.

I came around to the idea that my family didn’t need to define who I was. I could still have a healthy, normal life with HIV.

Finding my own network

Without my family, I knew I needed to find my own support network. I reached out to George House Trust – a Manchester HIV based charity – and found a peer mentor. They showed me that you can live a normal life with HIV. You don’t need to feel judged or stigmatised.

Later, I became a peer mentor and started delivering talks with George House Trust. We breakdown stigma about HIV by visiting schools, healthcare practices and even prisons. Helping to support and educate other people was a really healing journey for me.

I’ve also found social media has been a great platform to use to bring awareness to HIV and advocate for others who’ve also felt shame. Having open and honest conversations online about HIV prevention – such as using condoms and PrEP – is so important.

I do still face stigma online. Yet for me, the most painful part of my HIV journey has been losing the relationship with my family over something as simple as taking one pill a day.

Despite the stigma and loss I’ve experienced, my journey has given me this fire in my belly to fight for others and really be that advocate for them.

Advice for people just got a diagnosis

I’ve been living with HIV undetectable for four years now. I work with HIV charities like George House Trust and Terrence Higgins Trust to raise awareness of HIV testing and help people come to terms with their HIV diagnosis.

I’m really proud of myself for getting from that very vulnerable place with my mental health to now supporting others.  Studying an MA in Integrative Psychotherapy I plan to open my own private practice and support those in the queer community and those living with HIV. I want to offer the mental health support I know I needed during my early stage of diagnosis.

For anyone who has just been diagnosed with HIV, I would say be gentle with yourself. It can feel very daunting at the beginning and everyone’s journey is unique – but it is just one pill a day.

My advice would be to find a really strong support system. Having a supportive community and network is so vital in helping you overcome any feelings of shame and stigma.

As someone who’s been deeply stigmatised by my own family, I really lost that support that I needed early on. But I was able to find it through peer support, HIV charities and building my own community on social media. Follow my journey on Instagram and TikTok.

The most important message to remember is you’re not going to die: you can have HIV and live a healthy, normal life. I am living proof of that.