I was lucky. My HIV diagnosis didn’t shake me too much but I could instantly feel the destructive potential that not coming out and moving on with my life could have.
I had a moment of pure clarity. I stepped outside of my situation and I assessed it for what it was and the potential of what it could be if I just applied my skills and a bit of passion.
I had a large social media following and a substantial blog reach too. I was already actively campaigning for PrEP and then ironically – as I was about to start taking PrEP myself – I discovered I was too late. It seemed like I had been put in that position for a reason. So I immediately started documenting and sharing my HIV journey. Here is why I know I did the right thing…I was diagnosed on 12 August this year.
I was diagnosed on 12 August this year. I posted it for my 5000 Facebook friends the next day and I blog about it too.
I’ve had messages from every kind of guy you could possibly imagine – and not one single hater or shamer. I have been blessed.
Many guys tell me that they have not told anyone about their diagnosis, opting to keep it to themselves. One of the most difficult and emotional exchanges for me was Rob’s story. Rob sent me a message about a week after I started posting and blogging my HIV journey.
‘Thank you for making me smile’, he wrote, ‘for giving me hope for allowing me the courage to be me. And most importantly, thank you for giving me the courage and understanding that I’m going to be just fine and that life gets better.’
Rob did not know he had HIV but had taken himself to an A&E department, as he knew he was very ill. He thought it was just a very bad flu and severe dehydration. He remembers arriving at the hospital and then the next thing, waking up from a coma 4 weeks later to discover that whilst he was in the waiting room of A&E he contracted a very rare flesh-eating bug called Necrotizing Fasciitis which had eaten most of his right thigh and half of his right bum cheek. The day after he woke up he was informed that he was HIV positive. It has taken him the last year to recover.
‘I was completely immobile and losing hope and the will to fight anymore. I clicked on one of your links at home one day when I still wasn’t able to walk and have since been reading everything you post… You have given me hope and a space to accept and acknowledge my status and other issues and [helped] keep a smile on my face.’
‘I suffered through my recovery in intensive care in silence… It was hard dealing with it all alone… Dealing with practically dying in front of my family….and hearing all my ICU [intensive care unit] crewmates dying around me every night.’
‘I kept it [HIV diagnosis] a secret for ages…. I even kept the discharge letter from the hospital a secret for a while… My mum only found out about my HIV because she discovered the letter in a bag I forgot to put away…. And I watched her find it and read it but I couldn’t get up to snatch it or anything coz I was still immobile on the sofa’.
Rob has since bounced back, even better than he was before and has a full time job too. But It’s not just the big dramatic stories that have reassured me of my choice to be and remain HIV visible. There are all the little things that make a huge impact on a person’s day-to-day life. For instance, I was working with a guy in a nightclub and he knew about my HIV positive status from Facebook and he confided in me about his own positive status and how he was struggling with it. The guy cut his finger on a glass behind the bar and he started to bleed. He is undetectable and HIV only lives outside of the body for a matter of seconds, so no one was at risk. I could see him out of the corner of my eye. I hadn’t noticed what had happened but I could sense his frantic panic over something. He was freaking out about seeing his own blood (where he perceived the virus to ‘live’). The look of terror on his face almost floored me. I remember reacting the same way myself the first few times I saw my own blood after diagnosis. Because my workmate knew I was positive and he wasn’t an ‘HIV danger’ to me he came running to me with a first aid kit. He was so desperate for the blood to stop flowing. I cleaned his cut and wrapped his finger. The relief on his face was adorable. I reassured him that he had no need to panic should that situation occur again and not to think of himself as a walking health risk to other people. We hugged and kissed and carried on.
These little things can be the difference between making it through a tough day or throwing in the towel and wanting to give up. Isolating yourself in your own viral closet can often be the worst kind of hell. If people don’t know about your situation they can’t help you when you need it.
Over the past few months I’ve had so many people recognise me and be so relieved to finally find someone ‘safe’ to tell their HIV story to. I hear about 5-6 stories each week. Half of these are face to face. It is amazing the amount of unburdening you sense from a person once they have finally been able to say those words out loud “I am HIV positive”. Often I am one of the first people these guys have told. Many people on Facebook tell me I am actually the very first person. That’s an amazing thing and a humbling position of privilege that I have been afforded and trusted with. I’m so proud of these guys for starting their own journey’s too.
Of course the impact is not just limited to HIV positive guys. Plenty of HIV negative guys see my posts and visit my site too. The topics of discussion range from how to get PrEP to general HIV risk factors and I’m finding increasingly that I’m getting regular interactions on Mondays and Tuesdays from guys wanting to know about PEP too or who are concerned about friends that are behaving recklessly. And this is a scenario many feel they can’t really pop into a clinic for guidance on. It’s such a lovely and heart-warming thing to be able to help with. Here are guys who are worried about their mates; guys who can’t get their mates to engage with or embrace support from a clinic so they want to roll their sleeves up and help out; to guide their friends through these dark periods and help them stay safe and stay healthy. And it’s great that they want to do it the ‘right’ way without judging or shaming. These are all signs that our community is still highly functioning regardless of the traumas and injuries it is suffering under the current ChemSex culture. I’m happy and so grateful to feel part of an extended group of friends working towards a solution. I’ve only been able to establish that we have potential solutions by engaging and interacting. I think that’s the key message here: Let’s talk.