Terrence Higgins Trust ambassador Andrew Gámez-Heath chats to Midlands Zone about how his HIV diagnosis led to him helping others given the same news...
Where you’re from: Whitby, North Yorkshire
Where you reside now: Lincoln, East Midlands
Relationship status: Married
Five words that describe you best: Happy, outgoing, loyal, fun, talkative
When did you first find out that you were HIV-positive?
I was diagnosed on the 25th of November 2014. It's a day I will never forget. I was living in London at the time and had just entered into a new relationship, so thought it would be a good idea to get a sexual health screening. It was also National HIV Testing Week, so there was plenty of advertising around the city encouraging people to get tested. My partner booked an appointment, I went with him and asked if I could be tested at the same time. That day you could only get a screening if you’d pre-booked your appointment.
However, I was told if I went across the road to their ‘express’ clinic I could get tested there. So off I went on my own. I wasn't worried in the slightest, as I’d had a negative test three months earlier. I did all the usual swabs and then, at the end, I saw a nurse, who did my finger-prick point-of-care test for HIV. It was then that I was told that the test had come back reactive.
What was your initial reaction?
It felt like my world had just fallen apart. There were a lot of tears and lots of uncertainty. At the time, I knew absolutely nothing about HIV, so my first question was, 'How long have I got left?', to which the nurse replied, 'The same amount of time you always had.' I thought it was a death sentence and had no idea just how far we’ve come in the fight against HIV. I then asked them to call my new partner across the road and he came straight over. As soon as I told him, he just gave me a massive hug and told me that everything was going to be okay.
How long until you told friends and family?
I didn't really tell anyone about it for a long time. In fact, I didn’t tell my mum for about 18 months. I had asked my consultant very early on how I should tell my mum, and I remember her saying to me, 'Why do you need to tell your mum?' I replied with something about how I thought HIV was a big deal and that I therefore felt she should know. The consultant then asked how I thought my mum would react if I told her. I said straight away that she would go to pieces, as she didn't know much more about it than what happened in the 1980s and ’90s. My consultant advised me to wait until I had all the answers to all of the questions that my mum was likely to ask before I told her. At the time, I was the one who needed the support and the time to get my head around things. If I’d told her too soon, then I would’ve been the one giving the support.
Three years after receiving my diagnosis, there were still only a handful of people who knew about it. I decided on the third anniversary of my diagnosis that I was going to be a bit more open about it, so I decided to post it on my Facebook. I just wanted friends and family to know, and to give them the opportunity to ask questions and get a conversation going. The main reason for doing it was to educate them, so that they also knew the facts.
What were their initial reactions?
When I told my mum, she reacted exactly how I expected her to - she did go to pieces! However, I was able to give her lots of reassurance and she very quickly realised that I would be absolutely fine. As for the Facebook post, I got the most incredible reaction ever; So much love and support from everybody, and not one single negative comment. That status was liked and shared all over the world, which led to a journalist asking to write an article about me ‘going public’.
After the article was written, it was published in the Daily Mail, the Daily Mirror and Metro, all on the same day. After that, things went a little bit crazy doing interviews for ITV news and various other news outlets. I never expected it to go that far, but I was getting a positive message across, and I knew that I had a responsibility to speak up.
What challenges - physical, mental, social - have you faced since your diagnosis?
I haven't suffered from any physical challenges whatsoever. Having HIV has never stopped me doing anything. The virus is still highly stigmatised, so I’ve been asked a lot of inappropriate questions since going public. Some people living with HIV get really offended when they’re asked these things, but it really doesn't bother me at all. I used to be one of those people who knew nothing about the virus, and I probably would’ve said the wrong thing at some point as well. I just try to use these opportunities to educate the other person. I'm also just grateful that the person is willing to speak about HIV, as a lot of people won't even approach the subject.
How have you come to terms with it?
Having the knowledge and education early on after my diagnosis meant I was able to come to terms with it quite quickly. These days, thanks to the medication we have, it’s easier to treat the virus than it is to get rid of the stigma. My diagnosis led me to a complete change of career, and I now work for a HIV organisation in Lincoln. I wanted to give back and help others who may be struggling with their diagnosis, and also to educate as many people as possible and let them know the facts. There are so many people out there who still don't know that somebody living with HIV who is on successful treatment can’t pass on the virus to their sexual partners. That is a real game-changer when it comes to combating stigma, and knowing that fact really helped me get my head around my own diagnosis.
Has your diagnosis changed your outlook on life?
When I was first diagnosed, I thought it was the worst thing that had ever happened to me. It sounds crazy, but now, when I look at things, I can honestly say that having HIV is potentially one of the best things that's ever happened to me. I’m happier and healthier than I’ve ever been in my life. It’s also led me to work in sexual health, which I absolutely love. But above all, going public with my status has given me a platform to publicise a positive message on a scale I could never have imagined. I’ve worked on some incredible national campaigns with Terrence Higgins Trust, and have even travelled to Luxembourg to have meetings about HIV at the European Commission. It’s also allowed me to show everyone that you can have a completely normal and happy life living with HIV.
Are you honest from the outset when you have new encounters?
Remember the guy who I’d just started seeing when I went for the test and I got my diagnosis? Well, things went from strength to strength and in 2016 we ended up getting married. We're in a monogamous relationship, so I haven't needed to tell anyone about my status when it comes to sex. If I were single, I wouldn't have a problem telling someone, but not everybody would feel comfortable disclosing. At the end of the day, someone's HIV status is no one else’s business.
As long as the person is taking their medication and therefore undetectable, they can't pass it on anyway. We live in a world nowadays where we can use treatment as prevention, as well as PrEP for HIV-negative people. Combine that with condom use and regular testing, and it empowers people to look after themselves and their partners, and to have sex without fear or worry.
What advice would you give to someone who’s recently found out they’re positive?
Don't panic; you are going to be absolutely fine. Your life is going to be no different than it was before. Secondly, you've done nothing wrong. For some people, treating the virus and becoming undetectable can happen so quickly that your brain is still trying to catch up, but I promise you that you will be okay.
What support have you received, and who’s it been from?
My family, friends and husband have been fantastic. Positive Health, who I work for in Lincoln, were great as well. And all the love and support and the messages I get from strangers means so much still.
What needs to change to remove the stigma around the virus?
I cannot stress enough how important it is to educate people about HIV. People need to know that undetectable equals untransmittable. A person living with HIV on an effective treatment cannot pass the virus on. It's a ZERO risk! When people learn this, the first thing they say to me is, ‘Oh my god, that's amazing, how come people don't know this?' It instantly removes the stigma and actually should be celebrated. If we had a treatment today that was just one tablet and would treat cancer by shrinking the tumor down to a size that we were unable to detect, then it would be global news. Yet we have that for HIV and the majority of the population don't know about it, which I find so sad and frustrating.
What’s positive about being positive?
Being able to combat stigma and having the knowledge that HIV doesn’t have to stop you doing anything.
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