‘The test was positive.’ My heart stopped. The world came crashing down around me. I thought my life was ending.’: Man diagnosed with HIV becomes advocate, ‘My world is brighter’

Trigger Warning: This story contains descriptions of suicidal thoughts that may be triggering to some.

‘I was 23 before I came out as gay to my friends and family. I remember being around 9 or 10 years old and knowing I was more interested in men than I was women. Coming out was a very profound experience and it felt like a ton of weight had been lifted from my shoulders when I finally felt comfortable enough to tell people. Mostly, it was received well, and people were more than supportive. However, there were a few instances of microaggressions, hearing comments such as, ‘It’s Adam and Eve, not Adam and Steve.’

I was living in the Lake District in the UK. It is a beautiful part of the country, rolling green hills, mountains, and lakes, a view to behold around almost every corner. I came out in early 2011, around late February or early March, first to some friends while we were hiking on a snowy mountain. I struggled to be myself and feel 100% accepted and comfortable living there as a gay man. In October, I got a job and moved to Brighton. I had come on holiday in May with my friend, Jo, and we’d had the best time. I was exploring my sexuality, and my newfound freedom from my own thoughts and own challenges around being ‘in the closet.’ We had a great week, met some lovely people, and both decided the best thing to do was to move here! Being in Brighton, even just for that week felt amazing. I felt accepted and free to be my whole self without any compromise, judgment, or discrimination.

I went to my first Pride (in Brighton) in August of that same year and loved the festival atmosphere, the acceptance, and the vibes of the city during pride. I remember being at the festival in Preston Park on Saturday and not feeling too great for most of the day, but I stuck it out and carried on partying, meeting some friends later in the day. After the weekend, I headed back home to the Lake District with an increased love of Brighton and a heightened desire to move.

October came, the move came and went, and I was finally 100% myself and loving life. I’d met some great friends. I met a guy I’d started dating and everything seemed to be going well. Around the middle of November, I fell ill with what felt like a really bad cold or flu. I suffered from a fever, chills, night sweats, I felt sick to the stomach and was weak. I was off work sick and spent most of the week in bed, feeling horrible. At the end of the week, I noticed a large rash down my left arm. Having seen the TV adverts and hearing plenty of information, I knew it looked very much like the one you get with a case of meningitis. I’d put off going to the doctor for most of the week but with the development of this rash, I decided to take a trip to my GP. They thought the same as I did, and I was rushed in and admitted to the hospital for tests.

I was there for the evening, where I was poked and prodded, had a significant amount of blood taken, and several other tests. I was in a slight delirium at the time and I don’t remember exactly what they were testing for or what exactly the doctors were doing. I was discharged later and went home where I spent the next week or so recovering from this illness. I got a letter from the hospital around a week or so later asking me to go back in to get my results. The day of the appointment came, and I headed to the hospital, feeling a huge amount better than I had previously, and feeling ready to face the world again. I was headed for the Infectious Diseases Clinic at the hospital and was slightly confused as to why.

After waiting around for what felt like an age, I was finally called into a small room where a doctor and a student doctor were waiting for my arrival. The room was really warm and smelt a little musty. The doctor asked my consent for the student to be with us for the appointment, and I said yes, knowing it is important for trainee doctors to get real-life experience. The doctor talked through some of the tests that had been carried out when I was admitted a week previously, then proceeded to ask if I’d ever had an HIV test before. In all fairness, I should have but I had never really thought about it or even considered it. Sex education in school wasn’t all that great.

I confirmed to the doctor I’d never had an HIV test and didn’t think it was necessary. After all, every guy I’d slept with was protected, bar one person. He then looked concerned and explained to me one of the blood tests had been for HIV and the result had returned positive. I had never connected my previous illness with HIV. My heart stopped. A veil of darkness spread over me and the next few minutes felt like hours. It felt like my world had just come crashing down around me in the split second it took the word ‘positive’ to come from the doctor’s mouth. One overwhelming and devastating thought took over my whole mind: ‘I’m going to die.’ I thought my life was ending. It felt like it already had. These thoughts drowned out anything the doctor said over the next few minutes. The shock of the diagnosis turned quickly into tears, flooding down my face. My heart began beating again, faster than I’d ever felt it beat before.

All I could think was I was dying. How would I tell my mom and dad, my brother, my grandparents, and my friends I was HIV positive and I was going to die? All I saw was darkness. I saw no future. I started having visions of the advert the Conservative government released in 1987. It included a stark image of a tombstone with the word ‘AIDS’ chiseled into it and a booming voiceover warning, ‘AIDS- don’t die of ignorance.’ Unlike the advert, though, I saw my name chiseled into the tombstone.

I was overwhelmed with emotion at this point. The pure fear of this diagnosis blocking the intake of any additional information I was being told. There was a huge amount of information disclosed to me at this point and included meeting with the hospital’s HIV liaison officer, who was extremely friendly. He told me the reality of the diagnosis: I wouldn’t die, treatment could manage HIV really well, and I would have a ‘near-normal lifespan.’

None of this mattered at the time. I couldn’t take any of these details in, and they washed over me like a half-hearted compliment. Once I’d finished with the appointments, I was left to my own devices and my own thoughts and feelings and I found a quiet street adjacent to the hospital. I sat down on a wall and I broke down and cried uncontrollably. A short while passed and I eventually called my boyfriend at the time who had, that same day, traveled back to London where he lived. I told him, through broken speech and gallons of tears, I had been told I was HIV positive. Saying it out loud felt horrible and broke me even more. I picked up my shattered self and then called Jo, the friend I’d moved to Brighton with, and told her I needed her.

She met me in the city where I explained everything that just happened. Again, the feeling of saying out loud, ‘I’m HIV positive’ broke every ounce of my being. What ensued probably wasn’t the best idea, but at the time felt like some kind of normality in an extremely abnormal situation. We went to the pub. We chatted and somehow joked, laughed, and had fun while this feeling of absolute dread washed over me. I remember we played pool and kept ourselves entertained for the evening.

The following few weeks were horrendous. I was off work, I felt shattered, emotionally, and mentally drained. On one occasion, stricken with emotion, my mind awash with thoughts I can’t even describe, I found myself sitting on Brighton beach staring into the ocean. I wanted to throw myself in and not come back. I wanted this pain to be gone. This time it was me who wanted my life to end. I thought about the swirling currents, the deep abyss below the waves and I pictured my lifeless body lying there. I wouldn’t have to deal with any of this if I wasn’t alive. I remember a passer-by asking if I was okay. I wasn’t, but I just said I was fine. Whoever she was, I thank her, because I didn’t take my own life that day.

I spent so much time trying to figure out how I could have got HIV. I thought back to when I felt ill at the Brighton Pride festival in August. Was that a sign of the start of seroconversion? I convinced myself at one point maybe I could have picked it up from touching someone’s dirty cutlery at work. Again, that was my own stigma in play. In no way, shape, or form can you contract HIV from touching used cutlery. I was fighting for answers. A ‘lightbulb’ moment came to me. I remembered back to my week’s holiday in Brighton, and I knew who it was, or I thought I did. But this was all speculation, and I’d never be able to know for sure how or who I got it from. This took some serious coming to terms with.

My parents have been a huge part of my life. They completely accepted and supported me when I came out, and they had helped with my move to Brighton. They couldn’t have been any better as parents. The only issue now was, not even eight months after coming out to them and my mom using the phrase ‘just be safe and careful,’ I’d have to tell them I was HIV positive and deal with the fact I’d seemingly ignored my mom’s sound advice.

They had an inkling something wasn’t right from my conversations with them about my flu-like illness followed by a meningitis style rash. My mum seemingly knew more about HIV (and my status) than I did. ‘Parent’s intuition,’ as she calls it! I had a phone call with my parents not long after my diagnosis where I told them I was coming up to visit as I had something I needed to tell them. My mum wholeheartedly expected the news. The day came and I traveled to the Lake District to see my family. The six-hour journey was miserable. I constantly played out their reaction to my disclosure of the diagnosis to them.

By the end of the journey, my head was a mess, my emotions everywhere. They both met me at the train station. My mom reached out with open arms, full of that same love and acceptance she’d always shown me and my brother, and I backed away. I felt disgusting and dirty. I felt contagious. My own stigma still at play in my head. I insanely thought she might catch it from me somehow. I provided my parents with the number of the HIV liaison officer at the hospital, so she could call him and speak about HIV and the reality of it. This greatly eased my mum’s concern and worry, she said he’d ‘enlightened’ her and ‘put her mind at ease.’

I eventually talked to some friends back in Brighton and told them of my diagnosis. This was hard, although not quite as hard as telling my parents. Those friends I told were very supportive and would always say, ‘I’m so sorry’ when they heard. I felt sorry for myself. I blamed myself. After all, I was the one who put my trust in a complete stranger and believed his ‘I’ve been tested’ quip. The anger towards this man was insurmountable in the beginning but I learned not to be angry and to just hope he got tested and found his own peace.

At the time, medical guidance stated treatment should be started when your CD4 cell count reaches around 350. CD4 cells are the white blood cells that fight the infection and are attacked by the virus. For me, this was happening towards the end of 2013 when the virus was replicating and starting to win its two-year battle against my immune system. I started on antiretroviral (ARV) therapy. The first medication I took was called Atripla and was the one recommended to most people starting on treatment. I remember the first night I took it. I lay in bed. I had the emergency contact number at the hospital close to hand in case anything happened, but the night was fine. It was only a few weeks later when the side effects started.

I was told by the doctor the ARVs, just like HIV itself, begin working in the brain. I had vivid dreams, night sweats, and hallucinations. I felt ill with this medication, but I knew this was needed to keep me alive, so I stuck with them. The side effects lasted quite a while, and I was eventually moved onto a medication Stribild. Since the change, I’ve had absolutely no side effects and no issues whatsoever with these pills. I simply take one tablet a day, alongside a meal. That’s all I need to do to ensure my HIV is under control. In November 2014, I went for my routine, six-monthly doctor’s appointment, and received the news I’d been waiting for since that dreadful day in November 2011.

Looking at my doctor’s smiling face, these words flowed effortlessly from his mouth, ‘You’re undetectable Matt. The virus is under control and your viral load is below 40.’ I was elated. From what seemed like a bleak prognosis in 2011, I was now hopeful and truly happy I could live on undeterred by this now minor aspect of my life. I met my most recent boyfriend, Don, not too long after. It was October 2015 when we started talking. I knew I’d have to face my fears, push back my self-stigma, and tell this man I was HIV positive. I wrote the message, I deleted it, rewrote it, deleted it, and did so a few times.

Finally, I was happy with such a simple message of, ‘So, I’m HIV positive… but undetectable.’ My finger hovered over the send button. ‘Should I do it? Am I ready? What will his reaction be?’ I asked myself over and over. I pressed it. Like a dove being released to signify peace, I received this message back: ‘That’s not a problem at all.’ My face lit up, the dove flew off, a feeling of excitement and acceptance overwhelmed me. He’s okay with it. An amazing relationship blossomed, we were together for five years. Unfortunately, it ended a few months ago, but Don’s response is the same thing all HIV-positive people should hear upon disclosure. It takes a huge amount of trust to be able to share a diagnosis like this.

I grew up knowing only the stigma and negative aspects of HIV. The sheer number of deaths this virus caused is unbelievable. I eventually began researching, reading, and learning about HIV, through the internet, my doctor, and the clinical staff at the Lawson Unit in Brighton. Slowly but surely, I finally understood being diagnosed with HIV was not the death sentence I believed it was. I would survive and even prosper in life. Over time, my despair around being diagnosed with HIV faded and I learned to accept the reality. HIV is not the end of the world. In fact, for me, it was just the start of a whole new one. One which is much brighter, more colorful, and more meaningful.

Every December 1, I join in with millions of people across the globe to mark World AIDS Day and remember those whose lives have been lost and those families who were and are affected. This year, I recorded a video of my journey with HIV and shared it on social media to an overwhelming response. I hope to shine a bright light on HIV to educate, challenge the stigma and stereotypes, and to let others facing a diagnosis know they’re never alone.”

This story was submitted to Love What Matters by Matt Webster of Brighton, UK. You can follow his journey on Instagram, Facebook, and YouTube, and watch his HIV story here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.