The day of my HIV diagnosis, January 2018, I found myself in the passenger seat of my boyfriend's car being driven to the local sexual health clinic. I joked that we would get there, they would do the test only to find I was negative, and then we would laugh about the whole experience afterwards. In my mind I didn't feel anxious, I had dodged this bullet plenty of times, I had been for plenty of sexual health screenings that had come back negative. The journey to sitting in the waiting room of that sexual health clinic, on that day, started almost 6 months before.
I had a messy break up with an ex, which culminated moving back to my Mum's at the end of August 2017. I had a regular STI test that month and everything was clear. At the time I was off work with Depression and Anxiety, so I spent most of my time at home or occasionally, at the gym, to try and shake off the cabin fever of being at home all the time. October came, I moved into an apartment of my own, and as I'd been through a bit of post break up phase of sleeping around, nothing too crazy, but just enough to merit another screening. That test was also negative for all STIs. I'm going to be very honest; I didn't use condoms unless asked, and PreP was barely a thing at the time as I think to my recollection it was still being decided whether it was worth funding or just beginning trials. I know I was irresponsible, but I rather immaturely thought it was never going to happen to me, as clearly a lot of the guys who I slept with who didn’t wish to use condoms did either.
At the end of October and towards the start of November, I began to feel unwell, I wasn't sure if it was a cold or the flu, but it didn't pass after 2 weeks so I went to my GP. For those of you who don't know, HIV has an incubation period where it sits in your body without making itself known, then after 3 months or so you might go through something called conversion sickness. This is what I was experiencing, and the virus was starting to proliferate in my body, making more and more copies of itself, increasing what the clinic's refer to as your 'viral load' which is essentially a count of how many copies you have of the virus in your blood. When I spoke to the GP, they didn't seem that concerned about a bit of flu, despite having lost almost 10kg of weight, I went down from 78kg to 69kg in a very short space of time. The GP rather patronisingly but my weight loss down to being Vegan. I had blood tests at the GPs but nothing out of the ordinary was found. Time passed and I began to have migraines, something I had never suffered with, I was unable to cope with bright lights a lot of the time, I felt nauseous and spent most of my time in bed. The few times I tried to venture out to the gym, I had panic attacks that felt like no level of fear I had experienced before.
One evening at the gym, the panic attack I had was so bad I ran to reception and asked the receptionist to call an ambulance, I thought I was going to die but instead he sat me down on a chair outside in the cool night air. After a talk about our shared experiences with anxiety I went home. I returned to the GP some time after, now with lymph nodes swelling around various sites on my body, and it was agreed by the GP I would go to the hospital to have a review of these swollen lymph nodes. Lymph nodes are filters for harmful substances in your body and tend to swell when there's something making you sick. My hospital appointment came, and there it was decided that they would take a biopsy of one lymph node on the back of my neck. I had already watched my Mum go through cancer, albeit at a young age and unable to remember most of it, but concern was growing in my mind if this wasn't in fact cancer. Whilst waiting for the biopsy appointment, a friend on the internet suggested my symptoms sounded like HIV, and that I really needed to go get tested again. I was convinced I was safe from this possibility; two tests had previously come back negative. So, on that day in January, after countless visits to the GP, and being made to feel like a hypochondriac I was now sat in the waiting room of the sexual health clinic once again. I had a fear of getting sick that clearly came from seeing my Mum go through cancer, it was a phobia that manifested itself in crippling anxiety.
I was called forward, my boyfriend followed and waited in a secondary waiting room, whilst I took a seat in a small room with a nurse. We made small talk, and I was asked to volunteer a finger for a HIV prick test. One drop of blood would go into a pot with a reactionary fluid in it, a change of colour to blue or red would decide whether I was positive or negative. I wasn't told which was which. The colour changed as my blood dispersed into the fluid. The nurse told me it was positive. The silence in the room was suddenly very loud. My mouth dried. The nurse asked if I was ok and my first thought was my boyfriend, I can't remember how exactly the conversation went but I was told I would have further tests to confirm the result, and then when I found myself finally able to talk I asked could they please put my boyfriend on PEP as soon as possible. The nurse brought him in, and he knew why within an instant, he hugged me tightly, but I felt nothing except the numbness that came with the shock. They took a lot of blood to run various tests. The clinic took the names of all the sexual partners I had and their phone numbers, they offered to contact them for me, but instead I took the onus and spoke to them myself. Some difficult and upsetting conversations were had. Thankfully as far as I’m aware everyone came back negative. I still don’t know to this day who gave me HIV.
A week or so later it was confirmed that the test wasn’t a false positive, and that I did have over 2 million copies of the virus coursing through my veins. I went to a follow up appointment where I was asked whether I wished to start medication, I agreed without hesitation, I didn’t understand why you wouldn’t want to start treatment. Apparently, some people don’t simply out of choice. They put me on PeP, which for those who aren’t sure what PreP or PEP is, PrEP is pre exposure phylaxis which protects you from HIV infection, and PEP is post exposure phylaxis which can in most cases cure a recent HIV infection within a 72 hour window or be used to treat HIV to undetectable levels. PEP is two pills in the morning, one Truvada and the other Raltegravir, then in the evening another Raltegravir 12 hours later. I didn’t really notice any side effects, I started going to the gym again and there was a bit of an adjustment period because it does affect your bodies ability to drain lactic acid effectively, so that means your muscles will get very tight after workouts. I had a few walks to the gym where I was walking like John Wayne. Mentally though I dealt with the diagnosis as well as could be expected, I cried about it a few times. I told my Mum soon after the diagnosis was confirmed, but she had been through enough with me that this kind of news wasn’t a shock. I took the pills like clockwork, went for my appointments and tried to get on with my life. There was a reaction to a subsequent medication they switched me to but nothing that wasn’t resolvable by switching me back to PEP.
Life ever since has been pretty much the same, I eventually returned to work, and started to go to the gym more, finding no difference in my ability to hit the weights. I achieved undetectable status after 6 months or so of treatment, which means the medication reduced the virus in my blood to a point where it was below a certain threshold that meant it was no longer infectious. Unfortunately despite this the virus still hides in the body in reservoirs, pockets of the virus that the medication can’t get to such as in the groin or brain, so you have to keep taking the medication until science finds a way to destroy these pockets too. Which apparently according to some sources is not far off in the future.
HIV isn’t infectious through anything other than semen and blood, even at the beginning at its most prolific you can’t pass HIV on to someone else through saliva. Something that a recent Terrence Higgin’s trust survey highlighted, is that half the British public still wouldn’t kiss a HIV positive person for fear of infection through saliva. This is the only negative thing to being diagnosed with HIV, realising how much people still don’t know about the disease, or how little representation there is. Through my experiences in meeting people who have made some ignorant comments about HIV, sometimes through no fault of their own, I have realised it’s my responsibility to be as transparent and visible as possible. People need to see living with HIV is now more treatable than ever, and living with it is incredibly manageable.