Over the last few days social media has been filled with wonderful photos and stories of people proudly living with HIV from all around the world as part of the #NormalizeHIVChallenge. Including me.
There’s not a lot of good news floating around at the moment – especially on Twitter – which is why this challenge, which is being championed by those of us living with HIV, is such a welcome break from the doom and gloom of 2020.
The concept is very simple: you answer a series of questions, ranging from when you were diagnosed to what you do for work and add a recent photo, then hit send. Take a look on Twitter and you’ll see lots of real stories: teachers, students and personal trainers living with HIV. We live everywhere from Zimbabwe to Lincoln. Some of us have kids, some of us don’t. We’re all leading lives just like everyone else.
The challenge doesn’t mean that our lives aren’t without difficulties – especially right now – but it’s there to show HIV no longer needs to hold you back in life. To those newly diagnosed it says you might not be okay right now – but you will be someday. It’s pretty simple to take part in terms of writing the tweet and pressing send, but it does so much to challenge perceptions and the stigma that stubbornly continues to be linked to HIV. I’m so glad the challenge has taken off with hundreds of us taking part.
I recognise my privilege here. I’m comfortable and able to participate. I hope that my visibility helps to move us towards a world where saying you’re HIV positive is no biggie and won’t put you in danger – but we’re not there yet in the UK or anywhere else. No one should feel pressurised to tell anyone about their own HIV status.
“My life living with HIV is actually pretty damn normal! I take just one pill each day, and get on with my life.”
My life living with HIV is actually pretty damn normal! I take just one pill each day, and get on with my life. That’s the reality of most people living with HIV here in the UK. 97% of us are on effective treatment which means we can’t pass HIV on and we can now expect a normal life expectancy. The medical progress in HIV is a far cry from where we were a few decades ago.
People are often shocked to hear the progress, and lots of people still see a HIV diagnosis as a death sentence. So many people have completely outdated knowledge of HIV and tackling that is the real challenge. Through Think2Speak, the social enterprise I founded and run, I deliver HIV workshops in schools. I love how my sessions for young people often end up also educating the teachers who sit at the back!
When I hit send on that blue tweet button the other day, it reminded me how important it is that people see those living with HIV as people; living their lives like anyone else, not as people to be feared. We need to reframe the conversation around HIV and sexual health.
Before I was diagnosed in 2006 I hardly knew anything about HIV. My only reference point was the Mark Fowler storyline in EastEnders. I was scared and fearful about what it meant for me and my baby, who was just 13 months old.
My partner died suddenly after becoming seriously unwell. A post-mortem showed he had a compromised immune system, which turned out to be untreated HIV. He didn’t know he was living with the virus – effective testing and treatment means no-one should die from HIV anymore and things would have been very different if he’d been tested back then. I then had to get my head around being HIV positive, and thankfully our baby was HIV negative. It was a hugely painful time for my little family but I felt I needed to learn, needed to go on, be healthy and be a mum.
My HIV medication helped me do just that. The level of virus in my blood went down and it wasn’t long before it was so low it became impossible – yes that’s right, impossible – for me to pass on HIV to anyone else.
Starting treatment was an adjustment I had to make but it means that I’m not just living with HIV, I’m thriving with HIV. That’s how I want to see HIV being represented online and going by the huge numbers of people sharing their stories on social media, I’m clearly not alone in wanting to change the narrative about HIV. Because right now public perceptions about HIV couldn’t be further from the truth.
“Fourteen years ago everything in my life felt like it had suddenly stopped. Now I’m leading a happy life, proudly living with HIV.”
A shocking 38% of adults would feel uncomfortable going on a date with someone living with HIV, according to data from Terrence Higgins Trust. While over 60% of adults say they would or might end a relationship if they found out their potential partner was living with HIV. It’s great to see the ‘married’ question in the Normalize HIV Challenge – someone’s HIV status should never impact having a partner or starting a family. People living with HIV can be in relationships with HIV negative partners and not pass it on, and have kids free from the virus.
Stigma doesn’t just hurt, it fuels poor mental health. People living with HIV are twice as likely to experience poor mental health, including anxiety, depression and fears of rejection. That’s why setting the record straight on HIV is so important and it was one of the reasons I decided to start talking about my experience of living with HIV. So while the tweets are ‘just’ tweets, they have the potential to change hearts and minds.
It’s also amazing to see so many women living with HIV taking part. Women like me continue to be under-represented in messages about HIV and our voices can go unheard even though we make up a third of people living with HIV. But this has made me even more determined to stand up and be seen.
Fourteen years ago everything in my life felt like it had suddenly stopped. Now I’m leading a happy life, proudly living with HIV.
Lizzie Jordan is CEO and Founder of award-winning social enterprise, Think2Speak. Follow her on Twitter at @IamLizzieJordan.
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