Often the first thing people ask me is how did it happen to me, how did I get HIV? I guess that’s because HIV is often associated with sexuality, and I’m a heterosexual woman. But the answer is simple. Like most people with HIV, gay and straight; I had sex.
I was diagnosed with HIV on 19th March 2008. I was in a relationship and we’d had unprotected sex. But he, like 1 in 7 people who are living with HIV, didn’t know he had the virus.
I’d gone to the sexual health clinic because I had an STI and while I was there I was offered an HIV test. In my head I weighed up if I need one, as I thought my risk was low. But I decided to take one anyway.
I was diagnosed there and then. It was a total shock. I felt like a cloud floating around the room, unsure what to think and feel. My cousin had come with me to the clinic and when I told her she was screaming and wailing with shock and upset. She thought I’d been given a death sentence, as did I.
I told my husband who I was separated from, and he looked after me for three months. In that time I developed general anxiety disorder and an eating disorder. If you saw pictures of me from then and compared to now, you wouldn’t recognise me. I hid myself behind sunglasses and a big hat.
I was lucky with the support around me. My health adviser from the hospital where I was receiving my treatment even came with me to tell my mum and dad. I remember my mum saying ‘god, she’s going to die’, because like me when I was first diagnosed, she thought I couldn’t live well with HIV.
Three years after my diagnosis, I met other HIV positive women at a gathering in London, called Pozfem, after a support worker in Dorset convinced me to attend. This was a really big moment for me – to meet other women in the same position as me, and to share experiences.
After learning I was living with HIV, I didn’t date for a while. I felt so unattractive. When you are feeling so unappealing you think you need approval from other people, and when I went after that I got knockbacks. Dating can be one of the hardest things for people living with HIV, simply because of the ignorance and stigma still surrounding our long term health condition.
I’ve faced a lot of stigma in healthcare settings, which often surprises people, but the lack of knowledge and out-dated beliefs around HIV means the wrong information is being passed on, and you are treated as a risk. Once a nurse threw medication into my room as she didn’t want to come inside because she feared I might infect her. I’ve been asked by medical professionals countless times ‘how did you catch HIV’, ‘do you use drugs’, and ‘are you a sex worker’?
There is no reason to treat me any differently – because I can’t pass on HIV. This is one of the main things people still can’t believe and can’t understand. I’m on effective HIV treatment so I can’t pass it on. I, like tens of thousands of others who are living with HIV and on effective treatment, am uninfectious. This is because the treatment reduces the amount of the virus in our blood to such a low levels, ‘undetectable’ levels, that we no longer pass on the virus.
This is one of the biggest developments since the start of the HIV epidemic, yet people don’t know it. It means people can have sex, relationships and children, with someone living with HIV, without becoming infected. For some it can sound a bit unreal – but it’s true. And if everyone know this we could stop HIV stigma.
Five years after being diagnosed I started effective HIV treatment. When I started it wasn’t all about not being able to pass it on, it was more about longevity of life and being healthy, as well as for me, feeling part of society and being more “normal” again. But now, following the findings of the pioneering PARTNER study last year – which looked at 58,000 instances of sex without a condom between couples where one was undetectable and one was HIV negative and found zero HIV transmissions – I have the confidence to say I’m healthy, living well and can’t pass it on.
Today, 10 years after my diagnosis, I’m very open about my HIV status. All my family know, including my a daughter and son, as well as my two lovely grandchildren, even though they don’t fully understand everything yet.
At the beginning I always did consider them first, and especially with my granddaughter who is going to be 13 this year. She coming to that age when they start talking about things. I’ve gone into schools to talk about HIV to 13 year olds, and I’ve seen them when they’re nudging each other. I even had one boy who asked me if I’d had sex with a monkey. He did get asked to leave the assembly, but you can’t blame him, because that’s what he might have been told.
Samantha (left) and friend.
But this also highlights the battle we’re fighting against HIV stigma and ignorance. There is still a lot to do to bring public attitudes and awareness up to date with these medical advances.
Just last month, a Terrence Higgins Trust survey revealed that 40% of people would be uncomfortable going on a date with someone on effective HIV treatment, and shockingly only 9% of the public know that people on effective treatment can’t pass on HIV.
We need to challenge stigma with science. HIV no longer has to prevent people living normal, happy and long lives, but we know that it does.
That’s why I am backing Terrence Higgins Trust’s Can’t Pass It On campaign, which aims to bust stigma and help stop HIV transmissions. I want everyone to know, that Samantha Dawson, grandmother of two, is living well with HIV and can’t pass it on.
Life Less Ordinary is a weekly blog series from HuffPost UK that showcases weird and wonderful life experiences. If you’ve got something extraordinary to share please email firstname.lastname@example.org with LLO in the subject line. To read more from the series, visit our dedicated page.