I was asked to write something down about my experience of living with HIV for beyondpositive, I’ll do my best – I hope it makes sense.
My teens and twenties were spent in Ipswich, Suffolk so to be honest I got very little sex, some of that was bareback sex but honestly I didn’t think much of it. I’m 33 this year, when I was at school there was very little sex education, I just assumed that as I had been having hardly any sex that I didn’t need to get tested.
At the end of October 2012 I got shingles, I saw my GP who they sent me off with some pills to treat it. When I got home I did what we’re all told not to do and I googled “shingles”. Most of what came up was about people experiencing shingles whilst sero-converting – which obviously freaked me out a bit! I booked myself in for my first ever sexual health check. I took my sister along for moral support, and got the full screening. I had to wait two very long weeks for my results and then my sister and I went back to get the results.
I remember us driving round and round the car park trying to find somewhere to park, and me getting more and more agitated – my hands were shaking. Eventually I had to get out of the car and leave my sister to find somewhere to park, she eventually joined me in the waiting area after what felt like forever.
When I was called in to see someone I remember thinking I wouldn’t, couldn’t, ever be diagnosed with HIV – but at the same time I think I actually knew that was what was coming – it was a massive contradiction but it’s how I felt. The man I saw was very nice, gentle, friendly and seemed genuinely upset when he told me the test had come back positive.
I had no words. I had no idea what to think. I knew NOTHING about HIV – just that it was bad, and it killed you. He told me that they had to test again, to be sure. I think he was trying to make me feel better by talking about ‘false positive’ results. He brought my sister in, she looked at me and I kind of bowed my head and then shook it. I couldn’t look at her.
She cried, and cried and cried and cried and cried – I’d never heard anything like it before. It was uncontrollable. When it seemed like she was going to stop she started up again. It broke my heart to see her like that, it was horrific. I was just numb to the whole situation, I think I got shed little tear but it was from seeing her like that – not from what I’d been told.
Then the HIV consultant came in and was like “so, you’re HIV positive”, no mention of false positive results which was probably the better way to do it really. She was very straightforward and abrupt but in the best possible way. They explained everything to me, about how good modern medication is and everything else I needed to know – it didn’t seem to make my sister feel much better, however. They told me I’d probably had it for at least four months, that my CD4 count was over 1000 and my VL wasn’t too bad either.
As time passed I got used to the idea, I did my research and spoke to others with living with HIV. Many people were telling me I should go on meds sooner rather than later which directly contradicted what my consultant was telling me – whenever I saw her I asked her about going onto meds early and she told me no. Then when I spoke to my friends they were telling me to press harder for them, it was very confusing. I told my family I wanted to go on meds early and they said I shouldn’t start early.
Around that time I started working in porn, which was fun, and from an HIV point of view was great because all of a sudden I was surrounded by loads of positive guys, both my scene partners, and the guys behind the cameras – it had a normalising effect on my HIV which was very comforting. They too were telling me I should go on meds early too, but the fact that I wasn’t on them didn’t mean I couldn’t do porn. I set up a twitter account for my porn work and got talking to Jack Mackenroth, talking to him was very helpful and he too was astonished I wasn’t yet on meds.
I moved to Manchester and on my first appointment at my new sexual health clinic, The Hathersage, I told them I wanted to go on meds. They agreed that it was a good idea despite my CD4 still being quite high. At the time having quite a bad psoriasis flare up. I’d always had psoriasis but since my diagnosis had it been really bad.
Living in Manchester didn’t turn out too well. It was a pretty dark time for me, I ended up in situations that no one should have to go through, and the less said about that the better and it doesn’t really relate to my journey with HIV.
Then, somehow, I ended up in York, it’s a nice city if a little quiet. It was when I was in York that I finally started my medication. In the meantime my psoriasis has become pretty severe, my CD4 count was dropping and my VL getting higher. But neither were at worrying levels just yet. I just wanted really wanted to start meds before my CD4 was got even lower, I was worried it would never recover.
I was given a single pill treatment called Triumeq, apparently the side effects were minimal and they’d had great results from it. The nurse gave me my first pill and a cup of water. I was about to put it in my mouth but stopped short, I put it on the table and stared at it for a while, I guess I was just contemplating the fact that I’m probably going to have to do this every day for the rest of my life. Anyway, I took the pill and left.
I’ve been very strict with my adherence, taking it every day at 07:00. I had some hideous side effects for about a week and a half, looking back I probably should’ve taken some time off work because I was a mess. I told my boss what was going on and she was totally cool about it. I’ve since told several people at work and that’s been great too, I’m always happy to answer any questions they might have.
The medication has been fucking awesome. I feel great, my skin has completely cleared up, and I was undetectable after four weeks. I hadn’t realised how little energy I had ended up with after years of HIV and no medication. I feel alive! My performance at work has improved, and my performance in the gym too. I look and I feel great. I feel like I’m proof of what you can achieve with HIV and how it doesn’t have to hold you back from doing anything. I can do anything a negative guy can do and I can do it better!
York can be quite closed minded about HIV, and no one seems to know what undetectable means. But I can’t be too harsh on them because I used to be just as uneducated at one point. If I face any rejection due to my status either online or the real world it’s their loss.
I wouldn’t change my HIV status, I’m proud to be positive. I feel that we have a unique take on the world that has made us better people, and I have certainly come out the other side of this as stronger person. I have clarity and the drive to achieve anything.
We need to respect and mourn the people that died and those that still do in certain circumstances but I have little time for people that use their status as an excuse to feel sorry for themselves. I know people that refuse to disclose their status and others that use it as an excuse to get out of situations they’ve gotten themselves into and I have no time for any of it.
Be honest, own your shit, and we can start to strip the stigma away.
You can follow Sebastian on twitter as @SebEvansXXX (NSFW content)