When I was diagnosed, I was given some very informative websites, which all helped me understand more about HIV, the treatment and, for the most part, answered the questions I had. But everything felt very clinical and a little rose tinted.
I wanted something more…. real life?
For me, the thought of sitting in a support group in a local hall somewhere seemed like hell…Flashbacks to the scene in RENT, anyone?
I started Chat Positive to share my journey, the ups and the downs of living with HIV, in the hope that it will educate those that want to know a little more, and inspire those who, maybe still, are struggling to come to terms with being HIV+.
You are not alone in feeling alone…
The main thing I have learnt in the time this blog has been live, is that there are SO MANY people that are affected by HIV. People I have known for years and perfect strangers have messaged to talk about their experiences, but maybe haven’t had the courage to speak openly about it. If you are reading this and are struggling to come to terms with your diagnosis, please know that you are not alone.
Until recently, I felt like I was having to hide a part of myself; that I couldn’t be honest around people I loved, because I was worried about what they might think.
I have only lived with HIV since June 2018, and seven months on I can say that I have accepted that it is a part of me that I simply cannot change.
If you can’t change it… accept it. LOVR YOURSELF
Since speaking openly about my HIV status, I have taken ownership of it. People can think what they like, but I haven’t let it defeat me. And hopefully, by speaking out, it will help chip away at the stigma that is still all too prevalent.
I was working from home and being unusually productive for a Friday afternoon when the phone rang with an withheld number. I answered and it was a nurse from the GUM clinic… I’d recently been in for a routine check up and volunteered myself to start the PrEP trial that was taking place in my area. (A drug that protects from HIV)
“…Something is showing up on your test results and you need to come back for further tests, ASAP…”
My heart sank.
I’ve got it. I know it. I’ve got it.
I asked if I was HIV positive and she couldn’t answer at this stage… but there was a chance.
I’d been in earlier that week and they said I was eligible for the trial and even given me a months supply of the PrEP drug. So why call me at 4:30 on a Friday? Why not wait until Monday morning?
“We need to make sure you haven’t started taking PrEP”
Luckily I hadn’t.
Basically, PrEP is a drug that protects from HIV but is also used in the treatment of those with HIV, in combination with other drugs. If a person is infected and takes PrEP without the other drugs then the virus can become immune to it, making treatment more difficult. Hence the urgency of her phone call.
The conversation ended and I sat alone in my flat and my world felt like it was ending. I don’t think I’d ever felt this scared…. or alone.
The next morning I went to Dean Street Medical Centre in London, on the advice given by the nurse, as there was a possibility they had the facility to get the results back over the weekend.
They took bloods, that had to be sent to the lab, and did a rapid finger prick test. That showed up negative, however, I was told by the doctor that whilst rapid tests are a great screening tool, they can’t be 100% reliable as the virus needs to be in your body for a length of time before it will show up. (I’m not going to pretend to know the ins and outs as it’s beyond my knowledge). As it happens there labs were shut until Monday.
For the rest of that weekend I was a mess. It was the fear of the unknown that was eating away. I spoke to one or two of my close friends in London about it, but I didn’t feel like I needed to burden my family with the worry because there was still a chance it would be nothing.
Monday came and I was seen at my local GUM clinic for yet more bloods. This time they got most of the results back by the Tuesday morning, whilst they were still waiting for my Viral Load (a count of how much of the virus is in your body) the doctor made the assessment that my results would likely come back positive and that we should begin treatment…. which meant more blood tests.
I remember sitting in the consultation room absolutely sobbing. I didn’t know where to start, and it felt like information overload as the doctors, nurses and healthcare advisors tried to explain everything as kindly as possible.
At this point I have to say how incredible the medical staff were.
They gave me my medication, tons of information to take away with me, follow-up appointments, and told me they’d call when the Viral Load result came in.
The phone rings with a withheld number. It’s the doctor with my results.
My Viral Load was 10,000,000+ (a count of how many copies of the virus per ml of blood)… usually it should be zero.
My CD4 was 350 (a count of your white blood cells)… usually it should be between 500 and 1500.
It was quite scary hearing the doctor talk about numbers in the millions. I’d started treatment and knew I was being looked after in that sense. But I felt like I was at the bottom of a very large mountain, and knew that mentally and physically I had a long way to go.