Our service users share their stories
Sharing their lived experience of HIV helps break stigma and encourages understanding, support and empathy
* names changed & stock imagery used to protect anonymity
*Lucy
“Now I’m not waiting to die, but living and thriving.”
I had been feeling little unwell for a while, losing weight and I knew something was wrong. I decided to go to my GP. She asked if I had something in mind that I thought could be causing my health issues and I mentioned that I hadn’t been tested for HIV and perhaps that’s something we should do. In the back of my mind I had been wondering for a while if my health issues could be due to HIV, but I was so scared and it was extremely difficult for me to take the step to actually getting tested – I have never tested for HIV, ever before. The results confirmed my fears and it was a positive test result. At this point, I was just waiting to die. I didn’t tell anyone and just lived carrying this burden, all by myself. The stigma around HIV in my community is awful. I hear the way people talk about those with HIV and I knew I could never be open about my HIV status with them. That’s when I first went to TVPS and things changed. I met people like me, living their lives, not waiting to die. I saw a lady with a child and she explained to me that although she’s HIV positive, she was able to have an HIV negative daughter and seeing this and meeting all these people gave me so much hope. Now I’m not waiting to die, but living and thriving.
“I thought that it only happened to people who were sleeping around. Now I know it doesn’t matter how faithful you are, it can happen.”
I was in a long-term relationship of nearly 11 and a half years. We met when I was 19, and I was dedicated and loyal, holding onto the fairytale belief that we would be together forever. Despite my commitment, I often had a nagging feeling about my partner - he was charismatic, outgoing, and very popular - but I chose to push those doubts aside. Towards the end of our relationship, we applied for life insurance for a new house we had purchased in November 1999, which required blood tests. My partner, who was very controlling and oversaw many aspects of our life, had arranged for the insurance company to contact him directly instead of me if there were any issues with my results. Without my knowledge, he received the news that I hadn’t ‘passed’ the blood test and chose not to tell me. He had been unfaithful and discovered he was HIV positive in August, a truth he also kept hidden from me.
In January 2000, a friend arrived one morning and informed me that my partner had set up a doctor’s appointment for us. I was confused and asked why, mentioning that I needed to get to work. My first thought was that my partner had cancer and was preparing to break the news. On the way to the doctor’s office, we passed the cancer clinics, which only added to my confusion. We arrived at a general practitioner’s office, with no indication that it was an HIV specialist. I was shaking with anxiety, expecting terrible news about my partner. But when I was handed the form to fill out for myself, terror took over. My mind raced until the truth hit me - I turned to him and demanded, “What have you done?” The doctor explained that my partner had tested positive for HIV and there was a chance I had contracted it too. The test was done, and the doctor, who was compassionate, expedited the results. By that afternoon, my worst fear was confirmed.
The day I learned I was HIV positive was shattering. Processing the betrayal of a decade-long relationship while facing my diagnosis felt impossible. The stigma at the time was crushing, and I knew next to nothing about HIV. I felt like an outcast, terrified I might infect someone else - I even avoided touching my dog for months. My life fell apart. The shame, the lack of information, and the uncertainty about life expectancy left me numb. I can’t recall anything about the following six months, not even my work. Encouraged by my partner’s views, I refused to take the medication. But as my health declined rapidly, I developed Pneumocystis Pneumonia, and my body grew weaker. With a CD4 of 168, I had developed AIDS.
My partner attended all my appointments, but one day he couldn’t make it. In 2001, that visit alone saved my life. The doctor candidly told me, “I shouldn’t say this, but I don’t think this relationship is good for you. If you don’t start treatment, you have a maximum of six months, but I’d say more like three.” I convinced myself I would die dramatically, lying in a hospital bed with sunglasses like a wanna-be-Sophia-Loren, until the doctor bluntly corrected me: it would be an ugly and painful death. His honesty jolted me awake, and soon after I began taking the HIV medication. Within days of the first dose, it was as if a fog had lifted; I started to recover and feel hopeful again.
I was fortunate to have a compassionate doctor who went out of his way to support me. I know others who weren’t as lucky and succumbed to isolation or despair. For a while, I was one of them - I felt so alone that I attempted to take my own life.
Before my diagnosis, I was judgmental, believing HIV only affected people who lived recklessly. I learned the hard way that it can happen to anyone, regardless of how faithful or careful you are. Now, I’m grateful for the support network I found at TVPS. The people there are incredible - kind and understanding. Being with others who share similar experiences helps combat the isolation that comes with living with HIV. While medication has made it possible to manage the physical aspects, emotional support remains vital. Despite greater awareness, openly sharing your HIV status is still challenging. Having a safe space to talk and feel understood makes all the difference.
*Charlie
*Claire
“My husband was not faithful to me and didn’t tell me, so how could I know I was at risk?! “
I had never tested for HIV. I never even considered I would ever have been at risk of contracting HIV. I had been married for many years and after I was divorced, I didn’t have another relationship so HIV was never on my radar. Why would I need to test? I had been feeling unwell for a while but on this day, things got much worse. I was extremely ill and so my son took me to A&E. They suspected cancer and sent me for scans. I was so weak. The results came back negative for cancer. The doctor came to me and said there was one more thing they would like to test for, HIV. I tested HIV positive. It was devastating. I just broke down. The doctor said to me that they were so glad it was HIV and not cancer, because for HIV, there is treatment. My first month taking HIV medication, it was like a miracle! I felt so good. I got my strength back and everything went back to normal. I couldn’t believe what a difference the medication made! Today, I'm strong and healthy and I can do anything any normal person can do.
It turns out my husband was not faithful to me and didn’t tell me, so how could I know I was at risk?! It was six years after our divorce that I was diagnosed with HIV. I had been living with HIV for all that time and had no idea. Until I got ill, I had felt fine. Kept myself fit and healthy. It just shows that it can happen to anyone, even if you are married and think everything is fine.
I was told about TVPS by my HIV specialist. They happened to be at the clinic that day and my doctor asked if I’d like to have a chat with them. I said OK. The person I spoke to was amazing. It helped so much to talk to someone. I started going to TVPS drop-ins every week and it gave me the strength to carry on after my diagnosis. It was a place where there was no one to criticize you, there was no one to point fingers at you, because we were in a space where everyone was in the same situation. A safe space. Talking to others helped me so much and I could see how much it was helping others too. Even though I feel fine with my HIV diagnosis, I still go to TVPS, and I'll never stop.
*Logan
“I was lucky, because I tested regularly it meant I was diagnosed fairly soon after contracting HIV“
I hadn’t had a relationship for a while, and I had just been having casual sex. I went for full STI screens at the clinic regularly as I was having some unprotected sex. I had contracted some STIs over the years, but I never considered I would be at risk of becoming HIV positive. As far as I was concerned it was just an irrelevant part of the STI screening tests. I had a urine infection, and this prompted me to get a full STI screen, so off I went for my tests and then I got a call asking me to come into the clinic again. I felt something was wrong and refused to agree to attend until they told me. They confirmed my HIV test had come back positive. When you’re diagnosed, there’s a bit of denial involved, well there was for me anyway. When they told me I was HIV positive I wanted to get a second opinion, because I thought they could make mistakes, but it's really accurate and I didn't end up getting an opinion and began to accept my diagnosis. If I’m honest with myself, I think it had always been in the back of mind that maybe I could be HIV positive, because of the unprotected sex, but I pushed it down and ignored it. I didn’t want it to be true, so I was in massive denial. I had spent the next few months after my diagnosis blocking out reality and the reality of the situation.
My sexual health clinic told me about TVPS and I got in touch with them. They were really helpful because I was in a desperate space. I felt so toxic and like I didn't really have anyone I could share my diagnosis with. Things had spiralled in my life so much and I became homeless and was in debt. TVPS helped me get a flat and also to begin dealing with my debt. I was able to talk with staff and get advice when I needed it. I also got to meet other people in the same boat as me and slowly I felt better and less alone. I've met some really nice people that I'm still friends with today.
Looking back I actually think I was lucky because I tested regularly it meant I was diagnosed fairly soon after contracting HIV, rather than living with it without knowing for a long time and getting ill. The earlier you’re diagnosed, the better it is for you. You can get on medication, and this will stop you from passing it on to anyone else. I think that's something people really need to need to know about - the people who have tested, who know they are HIV positive and are on medication are not the ones passing it around, it’s everyone that doesn’t test and doesn’t know they have HIV.
The stigma around HIV puts people off testing, and that needs to change. I want people to know that HIV isn’t a death sentence. You can live a long, healthy life, have relationships, have children – the HIV that people remember from the 80s and 90s is just not the reality of HIV anymore and people need to get educated about that to make sure more people test.
*Jack
“I help support newly diagnosed people and show them you can live a long, healthy life with HIV”
I had always tested for HIV regularly. As a gay man I knew that regular STI testing was important. One day my partner received an inconclusive HIV test, so he needed to be tested again, and the clinic also advised that I should test too. My partners test came back HIV positive….and so did mine. I suppose I had a chance to process the fact that the test might come back as HIV positive, after my partner received an inconclusive result, so it wasn’t a huge shock at that point. However, before this had happened, I really didn’t see myself as being at risk and whenever I tested for HIV I never considered it might come back positive. I was diagnosed in 2007 and my partner and I were referred into TVPS for support. We accessed counselling and met other positive people. Having that support made a huge difference and since then I have become a volunteer and peer mentor at TVPS. I help support newly diagnosed people and show them you can live a long, healthy life with HIV. With the huge medical advances that mean a HIV positive person who takes their HIV medication, and becomes undetectable so they cannot pass on HIV, I think that’s pretty revolutionary, and I wish more people knew about it.