My name is Toby.

I was diagnosed with HIV when I was 19 years old after what I thought was going to be a routine test. Before my diagnosis, I had been extremely unwell. I now understand it was seroconversion, but at the time I had no idea what was happening to me. I had a rash across my body, fevers, vomiting, diarrhoea, and severe throat ulceration. It was the most physically ill I had ever been in my life.

When I was diagnosed, I did not take it well at all.

The diagnosis affected the way I saw myself. I carried a huge amount of self-stigma and shame. I turned to alcohol, substances, and disordered eating to cope with everything I was feeling. At my lowest point, I was bingeing and purging several times a day, restricting food, drinking heavily, and silently punishing myself because part of me genuinely believed I deserved to suffer.

It took me five years to find the right combination of HIV medication because of the side effects I experienced. I dealt with jaundice, chronic diarrhoea, pancreatic insufficiency, and psychiatric difficulties linked to the medication itself. I felt overwhelmed physically, emotionally, and psychologically.

There were points in my life where the weight of everything became unbearable. I attempted to take my own life on two occasions. It is not something I had spoken publicly about before, but it is part of my story and part of what I survived.

When my medication caused severe side effects, including daily diarrhoea, I did not tell anybody. For two years, I suffered in silence because I thought it was something I simply had to accept. I was drinking heavily at the time as well, and the damage to my body eventually led to pancreatitis and pancreatic insufficiency, which I still live with today.

But my story is not only about pain.

It is also about survival, recovery, and learning to treat myself with compassion.

I no longer drink. I have learned to recognise addiction, trauma, and self-stigma for what they are. I understand now that healing is not always linear and that some struggles never completely disappear, but they can be managed with honesty, support, and time.

I chose to study nursing because I wanted to help empower people to live authentically and without shame around intimacy, sexuality, and relationships. My passion is sexual health education, not from a place of judgement, but because I believe people deserve honest information, compassionate care, and the freedom to make informed choices for themselves.

There has been so much important work done around HIV awareness, especially around U=U Undetectable Equals Untransmittable helping people understand that those of us on effective treatment cannot pass HIV on sexually. But despite all of that progress, stigma still exists in deeply painful ways.

I get it all the time. People will see on my dating profile that I am HIV positive, and then they message me in ways that immediately reduce me to my diagnosis. Some of them are what people would call bug chasers. They fetishise HIV or project fantasies onto me because of my status.

It makes me really angry.

It really devalues my experience. It is incredibly insensitive and does not consider the history, trauma, pain, and suffering that I and so many other people  have been through. It is unfair to reduce somebody to something they never chose and did not even know was happening to them at the time.

That is what hurts the most. It strips away your humanity and turns your life experience into somebody else’s fantasy.

Living with HIV has taught me resilience in ways I never wanted to learn. But it has also taught me empathy, compassion, and the importance of speaking honestly about the realities people living with HIV continue to face.

I am still here. I am still living. And despite everything, I am still learning how to thrive.

For me, there is no single path that fits everyone. Whether that involves condoms, PrEP, DoxyPEP, abstinence, or simply learning what healthy relationships look like, I believe people deserve education without fear and support without stigma.

I have also experienced stigma in healthcare settings and in everyday life. I have felt pushed to the end of clinic lists because of my HIV status. I have been refused tattoos, double-gloved against, and treated like I was dangerous despite being undetectable and on treatment.

Those experiences hurt. They remind me how much ignorance still exists.

Today, I use my voice to support others. Through volunteering with Blue Sky, I speak openly about my life with HIV and help facilitate groups for people who are newly diagnosed.

To anybody who has just been diagnosed and feels frightened or overwhelmed, I always say the same thing:

“It’s okay. This is not the end. You are going to be okay.”

HIV may be the virus.

But stigma has often been the heavier burden.

And despite everything I have endured, I still choose honesty, compassion, and hope because people living with HIV deserve dignity, respect, understanding, and the freedom to be seen as whole human beings.