To many people on the gay scene, Jason Reid is known as one of London’s leading cabaret reporters and the RVT’s press and promotions manager. He’s also been living with HIV for 12 years. Here he recalls some of the challenges he’s overcome since his diagnosis.
Hi Jason. You revealed your status publicly, in an interview in QX, a few years ago. What was the response like from people on the scene after it was published?
It took me quite a while to come out publicly as HIV positive because of my own fear of being judged and treated differently. If it wasn’t for the support I received from friends and Cliff Joannou, who was editor of QX at the time, I don’t know if I’d have made that leap. For that reason, Cliff is someone I hold in very high regard to this day, and who has had a huge impact on my life by encouraging me to open up. The lead up to it was terrifying, but inside I kind of knew it was something I had to do at that time. When the piece was published the response was mostly positive – pardon the pun – which was somewhat of a liberating experience. For weeks afterwards I received messages from old friends, total strangers, and young gay men who were HIV positive and trying to come to terms with their diagnoses. On the scene itself I’d say 98% of people showed only respect and love. I was quite taken aback by it at the time. Perspective is always important and I didn’t think I was doing anything extraordinary, I didn’t crave praise or adulation, I just wanted to be be open, visible, support others, and be treated the same as anyone else mincing down Old Compton Street.
Did you have any negative reactions from that piece and, if so, how did you deal with them?
There were a few. Most of which came via social media, which, let’s face it, can be a horror show at times and can really bring out the worst in people. It did bother me for a while but thankfully I have a strong inner circle of friends. People who hide behind their screens or an alias, harassing others whilst being spurred on by their ‘pack’, are pathetic cowards. You have to hold your head up high and rise above such futility. Oh and if EVERYONE could stop buying and funding The Sun and The Daily Mail that’d be great too.
When you were first diagnosed with HIV, you had pneumocystis pneumonia (PCP) and, essentially, AIDS. Also, cryptococcal meningitis attacked your brain. What can you remember about how you felt in those early days of your diagnosis?
There was so much going on that I think my body and mind just went in to a kind of autopilot mode. I’d never been seriously ill or in a hospital prior to this so I had no pre-conceived fears about being there, I just knew I had to get better. I never thought for a second that death was a possibility and thankfully no one told me that it was – not until I was much better. The strain of HIV I contracted was particularly aggressive and this is the reason for the speedy onset of AIDS defining illnesses like pneumonia, meningitis and the drastic weight loss. There were a lot of blurry patches and some close shaves during those three months in hospital, but I consider myself very lucky to have had a supportive family by my side and to have received such great treatment from the NHS and Mildmay Hospice.
Today you’re undetectable and have been so for several years. A lot of the general public are still trying to understand the ‘Undetectable equals Untransmittable’ (U=U) campaign, and understandably so. When did doctors first explain to you that once you are undetectable you cannot pass on the virus, and what was your reaction?
To be honest I didn’t pinpoint the date and make a note if it. I’m sure my wonderful consultant knows – I hope she does. At that time we were all just so relived that I’d come down from a two million viral load to undetectable. There was no discussion about much else. I’m not sure the untransmittable research was at that stage, in fact, I’m sure it wasn’t. It’s only recently that I’ve been having discussions with my consultant about this. I know it’s a hard one for people to get their head around, it was for me at first. And I kind of wish there was a really simplistic way of getting the message out there. It would certainly make disclosing to new partners much less stressful. Having said that, the numerous HIV charities are doing sterling work surrounding this.
How would you describe your relationship with HIV over the years and what is it like today?
In the early days my HIV was akin to a pair of scales constantly balancing over my head determining my fate. A slight tip one way and things could go very bad. Over the years I’ve built my physical health back up with the help of health professionals and medication. The mental and emotional scars go deeper and take a lot longer to deal with, in my experience, and that’s something that’s still a work in progress.
To what extent would you say that your HIV defines you as a person?
That’s a difficult question. Instinctively I want to say not at all, but subconsciously I know that it still does in a number of ways. Especially in forming new relationships.
What is your advice to our HIV negative readers this World AIDS Day?
Quite simply do your best to play safe and get tested regularly. It’s not just a case of throwing back a few pills everyday and all is rosy: HIV changes your life. But, sweet Celine, don’t ever let people shame you or stop you from having fun. What a boring world that would be.
And what is your message to people who are HIV positive who are reading this interview?
I guess my only message is one of solidarity, as I’m hardly a beacon of healthy living and sobriety like a lot of positive people (I applaud them). I’m just grateful to be still living life. If you’re thinking of disclosing your status to family and friends but are frightened of how they’ll react then approach someone who has been through it and form a bond with them. Most people will gladly help and it helps to lift some of that weight from your shoulders.
With HIV diagnoses at the lowest point in years and medical advancements such as better drug combinations and PrEP, do you think now is the beginning of the end for HIV?
Who knows? I’m not a medical professional but I always feel a wave of excitability rush over me when I hear about new medical advancements. All of the work and campaigning that’s gone into getting PrEP out there over the past few years has been remarkable and those involved have done wonders. If HIV is eradicated in my lifetime I’ll be a VERY happy queen.