I will never forget that morning of the 4th July 2016. The day I received my little silver package in the post, little did I know then that this little package would be one of the most important deliveries of my life, as in this little package was an HIV self test kit.
I remember the excitement I had when I first seen what was inside. I was more intrigued to know how the kit worked than I was about the results. I am safe, so I had nothing to worry about. In a way I was doing the test to tick it off my list.
The test was relatively simple to do, just a prick of my finger, suck up some blood and wait for 15 mins for results. Instant results in my case, as I sat my sample flat and flooded it with the liquid. In a blink of an eye my life changed forever. My test returned a POSITIVE result. I was staring at two solid lines, they were as clear as day.
In that instance I froze, I wanted to throw the results away and put it down to a false result. It had to be a false results because I could not have HIV. My mind was collapsing with fear, terror and death. I stood looking at the results with disbelief, checking the box in search for it to say it’s not accurate and false results happen, but instead my eyes focused in on 99.7% accuracy. I knew I had to have the result confirmed, I had to know I had made a mistake and it was not right. My brain went into its own auto-pilot and before I knew it I was in my doctors, crying at the receptionist that I needed to see the GP. That moment, walking into the GP with the positive HIV test kit. Even he was not aware you could do a self test, but he checked it was an approved test and then he was a little lost as to how to help. I’ll never forget the words from his mouth, “This is like that time in EastEnders when Mark was diagnosed”. The best he could do was to self-refer me to the Sandyford Centre where I could get a full STI screening and express HIV test.
When I left the doctors I began to cave. I needed support and help and I could not go to the Sandyford by myself I was in no fit state to drive. So I decided to go to my sisters. The thought of telling my sister was ripping me apart but I had no choice. When I arrived I seen that my sister was not at home instead my cousin was there looking for her too. As soon as she seen me she starting asking what’s wrong, thinking something had happened to someone, that someone had died. Till I told her “It’s me, I just tested positive for HIV”. Lucky for me she’s a paramedic and in panic situation she knows how to take control. We went to her house, got organised and she took me to the Sandyford. All the way there we just kept talking about how I had made a mistake and we’ll be laughing on the way home. Well I had to wait for the results for a further two days. Days that I spent ripping myself apart inside thinking about all the ‘ifs’ and if I had infected anyone else; my niece, nephews and little cousins.
That night I spoke with my sister and explained about the home test kit and waiting for results. We all spent the next couple of days with positive thoughts, or tried to.
The day of my results came and I was adamant I was going it alone, but I caved and I ask my sister to come along with me for support. Mind, when I was called by the guy, I was sure I wanted her to come in with me, my gut knew I was not going to be hearing good news and I was right. I was barely sat on the chair and I could hear the guy say “so we have your results back and it is a positive result.” My head sank and my world collapsed around me. I was numb, angry and lost; now my death was certain. All I could hear was my sister’s cry’s in the background and her mumble “aww son”.
So I knew then I was HIV positive, but I was going to have to wait for an appointment with a specialist doctor for my full diagnosis. The journey was just beginning.
On the way home I made up my mind that I was going to tell everyone straightaway I was not going to wait, I had though hard about it over the last couple of days. My sister told me I didn’t have to, no-one needed to know. ‘No, I do have to, as they deserve to know they have to keep them self-safe, as far as I was concerned I’m a walking contagious disease. Plus if I don’t tell them the now and they find out later then it’s going to make things worse.”
My mum was the first and it broke my heart to tell her that her son is HIV positive. As expected she broke down in tears, but kept reassuring me that everything will be ok. She tried to give me a cuddle but I wouldn’t let near me. I didn’t want anyone to touch me, not even my own mum.
I then started to do the rounds around my family with a first aid pack in hand. Time and time again whilst saying they words I would break down in tears. I was expecting anger, to be rejected and really to loose each and everyone one of them. But instead of the rejection and anger I was given cuddles, reassurance and told “Michael, we still love you.”, “Stay strong”. Even though not one of us even knew what this would mean, they gave me all their support and love. That angered me in a strange way as I felt I didn’t deserve that, I had told them I have HIV and things where not going to be alright, not in my eyes at least. Every time someone tried to cuddle me I would push them back, I started to keep a safety net around me, taking one step back from everyone around me.
I began to research HIV and AIDS and discovered a lot of scary stuff… don’t always trust Google. But just as all hope was fading I discovered this magic word “undetectable”. The light at the end of a very dark tunnel. This one word changed my entire outlook; I was no longer looking at death but life. I could take medication that would almost halt HIV in its path and so importantly, stop me from passing it on. I started to beg for medication.
It took a couple of more weeks, but finally came the day when I was at my specialist doctors to find out details of my diagnosis and the course of treatment. To my absolute delight I found out that my viral load and CD4 where both at very “healthy” levels. My VL was below 300 and CD4 just below 900. But it then left me the dilemma of starting medication or delaying treatment as my body was dealing with the virus so well. I chose to start medication straight away, I wasn’t going to give the virus the chance to develop, but most importantly I knew that if I took the medication then it would stop me from passing it on. I remember taking that first pill, knowing how much power a little tablet held.
Within a couple of weeks, having taking my one tablet, like clockwork, each day, I became undetectable. I mind the word from my doctor as clear as day; “not detectable”. It was like he was handing me my life back. I got a copy of the results and went straight to my sister’s house to show her. I’ll never forget that look on her face, the smile and the glimmer in her eye. In that moment we both realised that everything was going to be ok. The meds where working and I had my life back. For weeks I had avoided being near my nephews and niece as much as I could, but that evening I gave them a massive cuddle and we all rolled around the carpet play wrestling. For the first time in weeks I could feel the weight lift from me.
In that time I had given up my life as I knew it. I had lost everything and it was time to get my life back. I still had some small piece of dignity plus bills that had to be paid, so I went out and got myself a new job. I thought it would be wise to get one in a call centre as I wouldn’t have to directly interact with someone. Little did I know how much this would help me though and ironically I didn’t really think that through, as in reality I would be working with around another 1000 other people in the same room.
When I began work life again I was expecting to receive stigma from people; for them to avoid me as soon as they found out about my status, as these people never knew me. But to my shock and delight, when I told my colleagues they gave me their full support. I explained all about my medication and how it means I cannot pass on the virus. Every time I could see that look in someone’s eyes; it wasn’t aww you have HIV, it was a look of surprise and shock and confusion. HIV quickly became a side issue, they were amazed about being ‘undetectable’, something no-one has heard about.
People keep on telling me that it is a brave thing to be open about my HIV status, but that is why I choose to be. As beneath that word brave lays a dark history of stigma, fear and misinformation.
It really opened my eyes and showed me that people only hold a stigma because they don’t know about HIV and by being open and honest about it, raising awareness and education around HIV, people are and will become accepting. It’s just the unknowing that it feared.
So life does go on after the diagnosis. I am finding myself getting back to a happy place. I have family and friends around me who offer their support and love and slowly I am starting to get my old self back, although I am still coming to terms with my own diagnosis, and what comes with it.
HIV is life changing but it doesn’t have to be and should not be a life sentence.
Thank you for your time. Michael
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Footnote - from Brigette
Michael, it is an absolute pleasure to know you and you honestly take my breath away with your determination, courage and passion and how you deliver your story to others to make them aware that indeed HIV is only 3 letters, not a sentence. At BioSure we are incredibly privileged to work in the field we do, where we really can make a difference and you renew our determination to continue to drive the conversation about testing until HIV has nowhere left to hide and it has lost the battle it's been waging for far too long. Thank you xxx