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.
Until very recently, when it came to telling people I was HIV positive, it felt like I was re-living my ‘coming out’ years all over again. (A part of my life I prefer not to dwell on too much).
The anticipation, knowing you going to have a difficult conversation with someone
The worry, of what they might say or do, that their opinion of you will change, and you will forever be known as ‘their friend with HIV’
The shame, the judgement, the fear
Trust me, I felt it all. But actually, after preparing myself for the worst outcome from everyone, I can honestly say that not a single person has said anything discouraging or insulting. In fact, I have had nothing but kindness, love and support.
Friends
My close friends were the first people that knew. I live in London, and as a result, like so many of us, live away from family. Friends down here are my family.
I wouldn’t say it was easy telling them; there was still the worry that they would see me as something different, or start unnecessarily worrying about me constantly. I considered just getting through it by myself and not burdening them, but soon felt that if I didn’t talk about it with someone I would explode.
A side note to any friends that may be reading this: it is in no way a reflection on the value of our friendship, but a state of mind you go through when you balance every possibility and outcome.
Some friends I found infinitely easier to tell than others, and it tended to be the ones that I had known the longest that were hardest to tell. Perhaps it was because we had memories from growing up together, and when you’re young you never imagine something like this could happen.
Thankfully, everyone I confided in offered nothing but love and support with no judgement.
What helped me – and I offer this as advice to anyone who may be struggling to talk to people – was knowing I could tell them “I will be ok.”
Exes
Unpleasant. Awkward. Necessary!
It’s never a nice conversation to have with anyone that they may be a risk they’ve been in contact with an STI. Especially the mother of all STI’s. But, it had to be done. At the end of the day someone’s life, and potentially many others, could be at risk. So I swallowed my pride and got on with it… I’d deal with my ego later.
My health advisor kindly offered to do this anonymously on my behalf, but I genuinely cared for the people that could be affected and wanted them to respect me for telling them personally… even if it could be an unfavourable outcome…
The way the virus works is there is an ‘incubation period’ of 2-6 weeks, from being infected to becoming ‘detectable’. As such it gives a timeframe of potential partners that could have caused the infection.
When the doctors diagnosed me as I was ‘seroconverting’, I knew who my potential partners were. It did also mean that I couldn’t have been the one to have given it to them, though I can’t say it made the calls any easier.
Seroconversion is the period of time when you go from being HIV- to HIV+ is often accompanied by flu-like symptoms, and takes place a few weeks after initial infection.
I picked up the phone, took a deep breath, re-arranged the pillows on my bed, took another deep breath, straightened the picture that had been askew for months, took another deep breath and called.
The phone-calls were easier than I thought they would be, and I hope that they respected me for talking to them personally… even if it was over the phone. I am still very close to them and they have supported me unconditionally since.
Family
I am lucky to have a family full of love and support. Yet, as many people have already told me with their own experience of HIV, telling family members was hardest of all.
It really did feel like I was coming out all over again. I didn’t want any of them to worry about me because I knew I would be ok… even if I wasn’t at the time.
I chose not to tell any of them until I knew for sure either way. After all, there was no point in us all worrying about something unnecessarily. Once the diagnosis had been confirmed, I bit the bullet.
My brothers were both fine about it, offering support if I needed, but I think my Mum took a little time to get her head around it. Don’t forget, she, unlike my brothers, lived through the 80’s and 90’s when HIV was essentially a death sentence. She, like me at the start, knew little of the medical advances and treatment available now and little about the virus itself.
After explaining that I was being well looked after and with the right treatment I will live a next to normal life, things were fine. My mum is an incredibly strong woman and has supported me through thick and thin… and continues to do so. I wouldn’t be writing this blog if it wasn’t for the immense love and support that come from my family.
The point I am trying to make is that by educating others about the disease, its treatment and prevention, the less cause for concern there is. That’s not to say HIV shouldn’t be taken seriously… it absolutely should. But with a little understanding the stigma you feel when you are diagnosed will soon disappear.
As always, please share this blog. You’d be amazed at the amount of people who feel they can’t speak out about HIV and have lived with this burden for so long.
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 SATURDAY
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.
THE SUNDAY
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.
THE MONDAY
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 WEDNESDAY
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.
That is nice prize for you. chatpositive.com http://bit.ly/2KEtmDf