Jason Sutton is the man behind the drag stalwart and much loved scene personality Miss Jason. This week, for the first time, he speaks with Jason Reid openly about living with HIV.
How and when did you find out you were HIV-positive?
It was about a year and a half ago. My friend wanted to test but he was scared of doing it, so we took a test together. I never imagined it would come back anything other than negative. He got the all clear and I got the ‘phone call’. At that time I just had to take a bit of a step back to understand it all, but I also wanted to be pro-active in my own care. Within a week I was seeing a specialist in Worthing who started me on treatment, and I’ve been on it ever since.
Had you tested regularly before then?
No I hadn’t. I’d been for a test now and again but I wasn’t in the routine of it. And I should have been. So the message that I would give to others, that is so important, is please just get tested – because then you know what you’re dealing with and you can deal with it accordingly. For me, my HIV status has become an unexpected ally. It’s made me focus more on what I want from life, both personally and professionally. It has also made me healthier and more self-aware.
Why do you think some people are still so wary of testing, even with all the advances in medication and standard of life?
From my own point of view, I thought, probably like many others do, that it would never happen to me and that I didn’t need to test – which is ridiculous really. I think if we don’t want to do something we all find a way of putting it off. To counter that, I can tell you that the service I received from the Terrence Higgins Trust and all of the medical professionals has been incredible. They’ve all been such kind, dedicated, and understanding people.
If you don’t mind, let’s go back to that moment when you found out. How did you feel?
Very, very shocked. I always thought I was invincible and then all of a sudden I was faced with a reality check. I soon realised that this was something I’d done to myself and something that I had to take personal responsibility for.
Emotionally, how did you cope from then on as you started on the anti-retrovirals?
Things did start to fall into place, thankfully. For the first fortnight I was fine with everything but then a month in I felt very down. Then I had the medication to get to grips with and all the changes that were happening in my body. There’s this internal war between the tablets and your immune system. Once I adjusted to the medication I was fine. Whenever I felt like I needed emotional support there have always been councilors there. I’m very grateful for that. I’ve not seen them for a while now and I kind of miss them.
As someone who now lives with HIV you’ll understand the real impact of stigma. What’s the key to diminishing the stigma?
The way to de-stigmatise HIV is to just talk about it and be open. Interestingly, I had a friend who I thought I was very close to and one day during a heated discussion they used my status against me. That really took the wind out of my sails. The more that people discuss and talk about HIV the more everyone will understand, and hopefully in time the stigma will begin to dissipate.
That’s absolutely right, and in my opinion because there’s been years of demonisation – especially of gay men – the stigma is one of the hardest things to come to terms with. Even living as HIV-positive people there’s always that subconscious self-doubt looming. Do you think there is a problem within the LGBT community? You spoke of the ex-friend who used it against you in an argument, and there seems to be a dark undercurrent lurking online and in certain circles.
Personally, I think the online attacks are foul. There was a survey on hate crime conducted recently in Brighton and the results showed that a majority of it was coming from within our own community. It’s utterly shocking. And it’s the language that is so nonchalantly used, to call someone ‘riddled’ – it’s such a demeaning term.
Thankfully I do think these kinds of attitudes are on the decline, from working on the scene and interacting with acts and friends, especially amongst the younger generation.
Absolutely, and talking about the youngsters (we sound like two old nanas), not long after I’d become positive I shared the information with a friend of mine and he had a young friend who had just found out too. This boy was having a torrid time, he was completely on his own with no support network whatsoever and because of this he slipped into deep depression. So I rang him to offer some support. He couldn’t believe I was also positive. Probably because I’m older, fat, and funny. But that’s the thing, HIV doesn’t discriminate. I managed to get him an appointment at the Sussex Beacon and they took good care of him.
The mental health aspects of living with HIV are another thing that can play such a huge part, and we could fill the whole magazine discussing that. Charity has always been important to Miss Jason, is it even more so now?
Yes! And that’s why I’ve recorded a new song (with Tony Power). It’s called Hold On To Your Dream. You can buy the track on iTunes or direct from me. Every single penny from the sales goes to THT.
Thank you so much Jason, do you have anything you’d like to add?
I’m not ashamed of my status. It’s changed my life completely and I’m a better person for having gone through it all.
• Miss Jason will be launching Hold On To Your Dream at the Two Brewers on World AIDS Day, Thursday 1st December.