I was sitting nervously opposite the health adviser with my daughter on my knee, when the words that would change my life forever were uttered:
“Your HIV test has come back positive.”
How? I was cold with shock. My body went completely numb, as tears began to race down my cheeks.
A million questions spun around my head: I was in my late twenties, would I live beyond my forties? Would I be able to have more children? Would I ever be in a relationship again? But all I could bring myself to say was one phrase: “No, it’s not on”.
I just remember staring blankly out of the window while the health advisor tried to reassure me that it wasn’t a death sentence, that I would live a long and healthy life. All I could think about were those gravestone adverts from the eighties that said “AIDS is a killer”. Everybody remembers those adverts don’t they? And Princess Diana visiting an HIV ward and shaking hands with terminally ill patients.
Before I got HIV I was married to a man I met when I was 18. We met at university and, when he graduated, I decided to leave my course early so we could start our working lives together. We were happy at first but we met when we were very young and 10 years down the line, we were different people. The spark had gone. We had our daughter together, which was wonderful, but I felt like I was clinging on to him because I was scared of being alone.
I made the decision to leave him and end our decade-long relationship. He moved out and I felt completely liberated; it was the first decision I had ever made for myself and I felt like I could finally live my life on my own terms.
After a while I tried online dating and met the man who would end up giving me the virus. From the moment I saw him I was head over heels. I’d never been so attracted to someone. But early into my new relationship, I contracted HIV. He already had the virus but wasn’t aware at the time; it is something we would later find out together.
I was a young, single mother – that alone was a huge amount to handle. Adding my condition into the mix was devastating.
The first time we had sex we did use protection. And the next time as well, but eventually we just got greedy and ran out of condoms. And since we’d done it once, it was easy for it to happen again. I wasn’t pressured into it; we just got carried away in the moment.
I think I’d asked him if he had been tested, but I was so wrapped up in the fact someone new and exciting was interested in me that I didn’t really think about anything else. I don’t know if I would have done it differently but I had issues with self-esteem back then and I think that played a role in not addressing his sexual health.
I found out first. We had both gone to have sexual health tests done and my appointment just happened to be earlier. I had been feeling a bit fatigued but just put it down to being run down at the start of the school holidays. Ahead of going for my test, I googled HIV and saw that was one of symptoms. I did briefly panic and think “what if” but pushed that thought away. Then they called me and asked me to come in for the results, but I still thought it would be something minor.
He came with me to the clinic but I was seen first, so I told him myself. They did a rapid test on him and it came back positive. He started crying and just saying sorry.
Sharing such a traumatic experience brought us closer together, we clung to each other for support. I wasn’t angry at the time. Now, it comes and goes a little bit, but back then I was just too busy trying to deal with the reality of what was happening to me. He didn’t know he had the virus so how could I be angry? And it’s true, he didn’t wear a condom, but I never asked him to either.
In its initial stages, the virus had an extreme impact on my body and led to a problem in my gut that meant I lost a dramatic amount of weight – six and a half stone in roughly four months. I was thin, bordering on frail – and incredibly weak. It was only once I’d recovered that I felt strong enough to try and understand the impact the condition would have on my life.
Despite the fact that women make up one-third of all people living with HIV in the UK, and in 2016 made up a quarter of new diagnoses, you rarely hear our voices in the media. A study by the Terrence Higgins Trust and Sophia Forum also found that 42% of women with HIV felt they had been diagnosed late, which can have life-threatening implications. More research is needed into why these diagnoses are not happening earlier on.
The lack of female stories out there made me feel so alone. I even set up a profile – as myself – on a dating app for gay men, as it was one of the few places where people were open about their status. I just really needed to chat to people who understood what I was going through. It’s one of the reasons I’m now determined to share my story, to tell women like me that having HIV can happen to you, and that it will be hard at times but you will be OK.
I was put on medication as soon as I was diagnosed and very quickly became undetectable, meaning that my treatment brought the level of the virus in my body down to extremely low levels. It’s not a cure and if I stopped taking my medication the viral load would go up again. But if you have been taking effective HIV medication and your viral load has been undetectable for at least six months, you can’t pass the virus on through sex. You still need a condom to protect you from other STIs and I have regular sexual health tests to make sure I’m ok.
There were many stages I went through to come to terms with having HIV. At first, I felt like getting HIV was something I’d inflicted upon myself and that I shouldn’t expect any sympathy. When I would tell people about it I felt the need to give them a run through of my sexual history. Now, I don’t feel the need to justify myself like that.
In fact, it might sound strange, but dealing with HIV has even given me a new level of confidence and strength in many areas of my life.
When I was younger, I hated my body. At my biggest, I have been a size 20-22 and I used to try to hide my stomach, the part of my body I felt most insecure about. I would get changed in the bathroom or at least make sure my back was to my ex-husband because it made me feel ashamed about the way I looked.
Getting HIV changed the way I see my body. I was so poorly in the first few months that when my body finally recovered, I realised just how precious it was. I’ve put weight back on but I don’t do those little things to hide anymore. Now when I go to bed with a guy I’m very much ‘clothes off, lights on’. Partners have even told me that I’m a lot more confident compared to other women that they sleep with.
My relationship with the man who gave me HIV helped me deal with the trauma of the situation. I also still really fancied him and the sexual side of it meant I didn’t need to think about the impact HIV might have on future relationships. It gave me time to get my head around everything. Eventually, I realised our relationship wasn’t working and we broke up, for reasons that had nothing to do with the HIV at all.
Dating after that was different. For example, I met a man online recently who I could imagine being with. He was younger than me, which wasn’t ideal, but we could stay up all night talking and our chemistry was great. When I thought it might become a relationship I shared my status with him, but it didn’t go well. He completely freaked out – he had a look of shock on his face. I think he may have thought it was recent and I was telling him he could be at risk of getting it. I explained my Undetectable=Untransmittable (U=U) status, but he just wanted to leave my house immediately. He was in shock.
The whole experience made me feel guilty for not saying anything sooner. I’m still glad I told him, even though it didn’t work out. But I now know that whoever I end up with needs to be open and understanding, as there are times when I’ll need their support. It was a really valuable lesson in what I need from a partner.
Other men I’ve met have been far more understanding. I actually met one guy on a gay dating app; while he wasn’t HIV positive himself, he was bisexual and, after chatting, we met up and slept together. When I told him he was fine with it; he had other people in his life with the virus and so knew it couldn’t be passed on.
I guess, now I know that some people will understand and others won’t. As long as I am happy and comfortable in my own skin, I’ll be able to deal with anyone’s reactions.
Still, there is a lot of work to be done to fight stigmas around HIV. I’ve recently got into online arguments with people who described sleeping with someone with HIV like walking through a field of landmines and it made me angry. People are so closed off and judgmental.
But now, I feel like I’ve come out of the other side. Somebody once told me that the hardest thing about living with HIV now is knowing that you’ve got HIV. That was certainly true for me.
In terms of my relationships, I would like to meet someone and have a family with them – something that is possible if I decide to become pregnant again. And now that I am finally comfortable with my status, I know that there’s nothing stopping me from having the future I want.
As told to Natalie Ktena