Tom: “Use your HIV status to be a better version of who you are”

Thanks for letting us have a chat with you today Tom. As you’re already aware I’ve dipped in to your backstory already but for those that don’t know you, would you mind introducing yourself to our readers and letting them know a bit about yourself? Where are you based? What is it you do?

Hey, I’m Tom, I’ve lived in York for what’s approaching 2 years where i work as a hairdresser. I also occasionally do a bit of porn and sometimes photographers want to take pictures of me. Which is fine by me.

Great! Aside from Dan I think you’re one of the first people we’ve spoken to from the porn industry. Didn’t you also live in Manchester at one point too?

Yeah I was there for about 6 months before york. And before that I was around Suffolk/Essex for 15 years. And before that various other places. I’ve moved around a lot!

I can see that! How are you finding York? Would you call it a more permanent place of residence?

That’s a loaded question! Ummm… I miss Manchester. Living there was a tumultuous time of my life. I had the best and worst times of my life there. It’s funny, my time in Manchester was massively influential on my life but it was only 6 months. My time in York has been longer but hasn’t left as much of an imprint on me. York has been a stabilising influence which I very much needed after Manchester. It’s got my career back on track and my body goals back on track and I have met some great people and I work at an AMAZING salon full of the nicest, coolest people I’ve ever met. I’m completely out about my HIV status at work and I couldn’t have asked for a better response. Occasionally ill overhear them talking about HIV and it warms my heart that due to me they have a greater understanding of it. I do eventually see myself living in Manchester again but the last time I moved there it was all very rushed and I wasn’t prepared for what I would come into contact with there. So when I go back I will know what to expect and how to avoid it.

Tom posing for Johann D’Nale

Well this is one reason we wanted to interview you today, we wanted to give you a platform to help raise awareness about HIV stigma in hopes that people will be open to education through your own personal story. Let’s touch on that actually. As you know I’m already fully aware of the story behind your diagnosis, would you mind sharing what happened with our readers?

I think like a lot of people; there were times I’d use a condom and times I wouldn’t. Back then I was exclusively the receptive partner in anal sex. I suppose I was under the impression that HIV was something that happened to other people. Anyway, I developed Shingles. It was very painful and I went to see my GP. This was in 2012. I was given some tablets and sent away. A little later I googled shingles and HIV kept cropping up. Apparently it’s common during seroconversion. The GP hadn’t mentioned this. I went to get a full sexual health screening. Never thinking it would be positive for anything. I went back a week later to get my results and obviously I was then tested positive for HIV. I knew nothing about HIV at this point. So I was kind of freaking out and asked how long I had to live. Eventually everything was explained to me. Although there were certain things that I had to find out from other sources.

Apparently I had a good CD4 and VL so didn’t need to be medicated yet. Eventually through my own research I came to disagree with this but it took a few years before I managed to convince them I should be put on them before my CD4 dropped to 350.

Thanks for sharing that with us Tom. What really stood out for me whilst I was researching you and your story was your sister’s initial reaction to your diagnosis. It really shows how HIV stigma still lingers and shows how education is vital in order to help erase stigma. Would you be able to share with us how your sister felt back when you were diagnosed and how she feels now post-diagnosis? 

Well my sister was waiting in the waiting area and after they told me I was positive they asked me if I’d like her to join me. I said yes and as she came into the room she looked at me and I just kind of shook my head and looked down and she started crying. Hysterically. It went on for quite a while. Just when you thought she’d regained composure she started again. That being said that changed quite quickly once we had all the information. There was a massive ad campaign in the 80’s telling everyone that it was a death sentence. Maybe there needs to be another one telling people what the situation is now.

Tom posing for Maciek Groman

A lot of people are still very familiar with the campaign you’re referring to and still remains to be the only education some people have had since unfortunately. May I ask how long it took for you to reach undetectable levels and how you felt afterwards?

Once i eventually started meds, later than I wanted but still well before NHS guidelines, it took 4 weeks to become undetectable. And my reading has been 0 ever since. It felt great. I had some strange side effects for about a week and a half. I felt generally spaced out until about lunchtime but it gradually went away. I’m on Triumeq. I’d had psoriasis since my late teens. It runs in my family. And that completely cleared up after I started taking the medication. I just generally felt better and had more energy.

That’s great to hear! I’d like to ask what your advice would be to the newly diagnosed? Any words of wisdom?

Don’t panic. You’re fine. You’re going to continue to be fine. Go on meds ASAP. Don’t listen if they try and make you wait. Do your own research. The longer you’re not on meds the more irreversible damage will be done to your immune system. All we have to do is take 1 pill a day. For some it’s more but that depends on what pills you’re on. As far as I’m concerned that’s nothing. Diabetes would be worse, we don’t have to inject ourselves. There are a lot worse things to get than HIV. We have a normal life span. Can’t pass on the virus. Get check ups every 3 months. It’s all good. As long as you take your meds. I would also say try and be as open about it as possible. The more people are open about it the more the stigma will be stripped away. Use your HIV status to be a better version of who you are. Make healthy choices. Quit smoking. Eat right. Exercise. Reduce alcohol consumption. Show the world that HIV doesn’t have any effect on you. Don’t wallow in sorrow and regret. Don’t let anyone make you feel ashamed.

I take pride in my HIV status to try and somehow counterbalance the people that are ashamed of it. I’m very open about it to counterbalance all the people that feel they can’t be open about it. I almost feel that being HIV positive gives me a greater perspective on things than negative people because I’ve had to deal with issues they will never have to.

Be defiant and live your life your way. Fuck the haters. Oh and block the weirdos on grindr that try to fetishize your HIV status!

That’s a beautiful response! Is there anything else you’d like to say to our readers before we end this interview?

I think I’ve said most of it. I approve fully of Grindr’s new option in the personal info section where you can now say your HIV status. I’ve heard people say it’s trying to put us in boxes but as far as I’m concerned if it helps to stop pointless conversations on there I’m all for it. Apart from that my Twitter handle is @sebevansxxx and if anyone has any questions feel free to contact me on there or on Facebook! Thanks for reading!

Want to take part in our #STIGMAWARRIOR campaign? Have your say on HIV stigma and get in touch: