Florence’s Story

In 1999, I realised I was pregnant. So I went to the hospital and a lot of the women were being offered the test for HIV but they were only offering it to women from certain countries, like Zambia, and Kenya and places like that, and not West Africa, where I’m from. So I went to my prenatal testing and the midwife asked me if I’d like a test done and I said ‘no, I don’t need that’. I thought ‘why is she asking me that?’ It had never occured to me that I might test HIV positive. And that’s because of what I knew about HIV at the time. I didn’t know it could happen to anyone. I thought it could only happen to certain types of people.

But she said to me ‘if your test does come back positive, we can put you on medication which will stop your child from getting infected’. And so I thought I should do it, just in case – to protect my child. And then I went home. And in those days, the test took two weeks. So in two weeks time, I got a letter saying ‘come back for your results’. So I thought ‘what’s this?’ I thought maybe I had anemia or diabetes during pregnancy or just something – one of those things. I hadn’t been thinking it was going to be HIV.

I thought HIV only happened to certain types of people.

But I went to the see the midwife and I was waiting and this time another midwife came and I later found out that she was a specialist HIV midwife. And she came to me and she called my name and I talked to her and she took me to a room and in that room there was another woman. Now I know that woman was a psychologist, a specialist HIV psychologist. I sat down and they told me the tests I had done for HIV had come back positive. I immediately got distressed. I started to shake. I was emotional, I started crying. I thought that I was going to die in a few months. I didn’t think people with HIV could live long.

So she asked me, she said: ‘What do you know about HIV?’ And I said: ‘Well, I know it will kill you and you’ll get ill and there’s no cure for it’. And then she spent over two hours with me explaining that medication was available and working and that my body could fight the infection and how the HIV would become undetectable. And at that point, I wouldn’t be able to infect my child and I would not fall ill as well. So they explained all this to me at the hospital, they took the time to explain this to me, to tell me the facts.

And she did one thing, she was really good – and I’ll never forget it – she asked me if I’d like to meet other people living with HIV. And I said that I would. So she gave me the number for a women’s organization and she told me to call them. So I got home that day and I called the number. And one lady – she’s an activist now, an advocate for people with HIV – and she said ‘oh I’ve been so unhappy living with this for five years’. And I thought ‘five years? You’ve been living with this for five years?’ And she said ‘yeah the medication works and you can still have children and you can still have a life, you can still get married, you can still have a job’. I was really relieved. And she told me to come to one of their meetings.

So I went to the meeting, expecting to see people who were frail and sad and unhappy. And I got there and there were all these women all dressed up, their nails were all done – I can’t forget that. They had makeup on and their hair was done and they looked nice, they looked like they were well-kept. They didn’t even look ill. And one of the women there, she took me under her wing, she befriended me, she was telling me not to worry, ‘we’re all in the same boat’, you’re going to be fine as long as you take your medication.

After that, I started going to that group every week. And I then decided to tell people. I had to tell my sister because she was a care assistant at the hospital where I was going to have my baby – she was a care assistant on that ward – and she knew the midwife who had done my test. And I decided to tell my ex-boyfriend. So I called him up and I said ‘I’ve done a test and the test has come back positive’. I said that I thought he should have a test done just in case. And he said to me that he was going to have a test done and if that test came back positive, he was going to get a gun and he was going to shoot me. And I thought ‘oh my god’. After a week he called and his test had come back negative. So I had to avoid him – I couldn’t trust him from then on. So I thought ‘no’, I didn’t feel safe around him, I kept away.

He said that if his test came back positive, he was going to get a gun and he was going to shoot me.

And then I decided to tell the father of my son. And I told him, I rang him up and I said ‘I’ve done a test and the test has come back positive, will you please go and have a test done?’. He was calm about it and he said ‘okay, I’ll go and have a test done’. It took about a week for his tests to come back and they came back negative. And then he kind of cut off. I used to be the one to always call him. I think because of the HIV he avoided us – me and my son. I was calling him because I had a phone number for him and I kept calling him, and he said ‘nah, nah, I’m in Manchester and I have a job there’. He kept making excuses. But I kept on calling him, saying ‘just come and have a relationship with your son, just so he knows his dad’. But he just refused. But he was always asking about my son, saying ‘has he had his test done?’ and I said ‘yes, he’s done his test’. And all the test had come back negative, and I told him.

The next time I called the number I was disconnected. And I haven’t heard again from him – I don’t have any details of him. But he knew where we were. He could have come or called us. But he never did.

So I had to bring up my son without a dad because of the stigma of HIV. We weren’t in a relationship anyway really – only intermittently. But by then I just wanted a friendship, just so he could know his son. But he was so scared, I think he was afraid of it.

I had to bring up my son without a dad because of the stigma of HIV.

I also told a friend who I knew from when I was very little in Nigeria. We were good friends, we lived on the same street and we used to go clubbing together, out together and everything. So I thought I would tell him. I told him on the phone. And the minute I told him, he said: ‘Look at you, look at what you’ve done with yourself now’. He got nasty, very aggressive. And that was the last I heard of him. He never called me again.  

So people can be really bad. But then I told several other people about experiences I’ve had. Over the years, I’ve told friends. And I usually get one of two responses. I told my cousins and as soon as I told my cousins, every time I said I was coming to visit them, they would always find an excuse. So that relationship broke down. But there were other friends I’ve told that have been really nice. I can talk about HIV freely around them and they are really nice about it and they’re well educated about it and they can’t understand why other friends of mine are cutting me off. One of my friends – one who has been very supportive towards me – she said to me the other day, ‘you can go on the computer and just read about it, there’s nothing to be scared of, especially now when it’s untransmittable’. So things are easier now.

And over the years, I’ve done a lot of volunteering in various HIV organizations. I’ve done a lot of projects with people and I’m still involved in trying to set up support groups and focus groups. I’ve been involved in research, community HIV research. I’ve also been involved in speaking in public. And, at the moment, I’m involved with the Positive Voices project. And I’m also a trained care mentor and I mentor other people living with HIV.

Now, my son. I always took him to all my appointments, because I was a single mum at that time. Every two months, we used to do the check-ups. He asked me once, when I was taking the medication – he was about three then – he said ‘what’s that Mum?’ and I told they were vitamins because I didn’t want to tell him about it at that time. And then one day, we were just watching the telly and on the telly there were children from Uganda and they were being taught about HIV and about sex and the body. They must have been five year olds or six year olds. So I called my son and I said ‘come, come, let’s watch this together’. And I explained what HIV was and that there was no cure for it but if you take medication every day then it won’t make you ill. So that’s how I explained it to him. And I’d already explained where babies come from so it was kind of easier to explain. And I said: ‘When the mum and dad have sex without a condom, if one of them has HIV, they can pass it to the other one’. And I explained it in a very simple manner, like that.

And then a few months after that, I was taking my medication and then he looked at me and he said ‘Mum, what are you *really* taking these tablets for?’ and I thought ‘oh I better just tell him’ so I told him. I said: ‘You know what we watched on telly? Do you remember the story about HIV I told you?’ I said ‘Mumma’s got that’. And he laughed ‘he, he, Mumma’s got HIV’. And we laughed. And I said to my son ‘please when you go to school, please don’t share that with your friends, okay?’ And then I told him the reasons why. I said that people aren’t very nice to people with HIV because you get it from sex so people are not very nice, not sympathetic. Not like if someone has cancer or diabetes or something like that.

I told him that Mumma had HIV. And I said that people aren’t very nice to people with HIV. Not like if someone has cancer or diabetes.

And he was okay. I think he kind of just forgot and carried on with life. Not a big deal. If you don’t make it a big deal, it won’t be a big deal for them. And then after a few months he said ‘Mum am I HIV positive?’ and I told him he wasn’t’. And I told him the story of how I was diagnosed and how I’d taken medication so I couldn’t transmit it. And he was okay with that. And then I told him how in the cresh he’d gone to, that child and that child, their mummas also had HIV. And I told him how it was normal, and how they were all on medication. So I didn’t make him scared, I didn’t make him think it was a scary thing.

So recently I asked him, I said: ‘Did you ever tell any of your friends about HIV?’. And he said ‘actually yes, when I was drunk one day’. He’s 19 now. So he told me about six months ago that he’d told someone. He’s now in university, studying film. He’s quite okay with it – he doesn’t worry about it or anything like that. And he used to be so good – he used to remind me to take my medication. And when he sees anything about HIV on the telly or anything, he’ll call me and he’ll say ‘Mum, there’s something on the telly’ or he’ll tell me about it.

And then I met my husband…I met my husband through a HIV organization when my son was only two but we were just friends. And then we lost contact and that was because he went to live in Hull. And then I met him again in 2009 and we started going out and then in 2011, we got married. So he’s been a step dad to my son. They get on well, they’re okay.

I work full time. I’ve worked since I got my leave to remain because I was an asylum seeker, I couldn’t go back to Nigeria with HIV. But I didn’t get my leave to remain until ten years after, until 2010. So ever since then I’ve been able to work and I’ve always worked. I’m a qualified nursery nurse, I’m a qualified teaching assistant and I’m a qualified mental health carer. And at the moment, I’m studying to be a social worker at university.

To other women with HIV, I’d say: ‘Be confident and tell people. Make sure when you tell someone that you have enough time to explain to them about the medication and how you aren’t infectious, you can’t transmit the infection. Then you will know your good friends – because the ones that are not good friends, they’ll disappear. And the ones that are good friends will stay. And same with family members – because, as I said, my cousins are now disconnected with me. That means they’re not very good people for you anyway’. So I’d say: ‘Read up about HIV, make sure you’ve got all the facts, and tell people. Because now with the medication, we need to send the message that the fear that people have of HIV and people with HIV isn’t right’.