Living well with HIV
It’s nice to put a face to a person’s story. Being open with HIV is really rare, especially amongst women. I know now that by talking about HIV, I am empowering other women to do the same and to feel safe doing so.
I’m involved with lots of projects to do with HIV and women living well with HIV. I want women to have a voice. So if someone whispers something to me in a group or a workshop, I will shout it out for them. We recently won the Sexual Freedom Award for a project we’re organizing called ‘Catwalk4Power’. The project came about because we felt women needed a space to express themselves, to express their sexuality and their sexual freedom. People think of a catwalk being about sexy lingerie but ‘Catwalk4Power’ is about leaving your inhibitions at the curtain and walking tall, with your head high and shoulders back, strutting across the podium. There, we express a little of our sexuality. And I love to do sexual awareness projects because we don’t talk about sex or condoms or sexual empowerment enough. I know, for example, that if women had more confidence to say no to sex without a condom, most wouldn’t be in the situation we are all in now.
I know now that by talking about HIV, I am empowering other women to do the same and to feel safe doing so…
My situation, on the other hand, is a little different because we stopped using condoms to have a baby. That’s how I ended up with HIV. I didn’t get him tested beforehand so I got a baby and I got HIV. Luckily enough, my daughter is fine. She turns 16 this year. I did everything I was told like not breastfeeding and having a C-section. But if I was to have more children now, I would do the opposite and go natural like my first child, knowing it’s fine. Me and my daughter’s father are no longer together as he lives in a different country now. Bless my kids they have grown up knowing that I’m HIV positive so it’s their normal.
My current partner is HIV negative and I push the U=U approach rather than using condoms. While I am undetectable, I am untransmittable. I do my bloods twice a year for my peace of mind and he does bloods once a year as part of his MOT. It is sometimes hard being with someone who is negative as they can never understand how much it impacts your life and your future choices – like which countries I’m able to travel to without be stigmatized.
Bless my kids they have grown up knowing that I’m HIV positive so it’s their normal…
The thing that all organizations are starting to realize now is that it’s not about a coffee and a chat or just love and support. Sometimes we need some emotional support and that is where a peer mentor comes in or a psychologist. But what we also need is upskilling and options to work, ways to tell our employers that we have a long term illness, that we have fluctuating health but that we really do want this job. I’ve got HIV and I’ve got doctor’s appointments every other day. Do I have to tick a disabled box? These are the kind of things I want employers to be aware of.
…As well as making sure sex is in there. Sex and self-pleasure are still big parts of my life. I’ll often be the one persuading my partner to have sex and not the other way around. And if he doesn’t want to, well, there are always toys…Intimacy is also important. I have to find the time to care for my kids, keep both flats nice and also connect with my partner. Watching TV on the sofa is not connecting. It has to be more than that.
Sex and self-pleasure are still big parts of my life. I’ll often be the one persuading my partner to have sex and not the other way around…
Another thing we need is more discussion around domestic abuse. It’s not really talked about but it often goes hand-in-hand with a positive HIV status. There are different levels to it – verbal, financial abuse, isolation – all these things need to be checked and talked about with women living with HIV. Because we slip into relationships scared that those partners are the only person who will EVER want us – often they will explicitly tell us that. There is a lot of abuse done to HIV positive women which wouldn’t be tolerated normally. We all experience that at one point or another.
I have been diagnosed 16 years and each year I learn something new: about myself and about living well with HIV. When I first got diagnosed, I was open to tell people because I had learnt a little bit about it, and I thought ‘this is going to be nothing’ – the more open people are about it the more it will change. But my family said no. They took me into a room and they told me not to tell anyone, to keep it between us, promising they’d look after me. I thought ‘okay’. So I did that and then when my daughter was about one and questions started coming up from family members ‘does she have it?’ I had to get her tested again and get proof. But I felt I shouldn’t have had to do that. I took precautions and they knew my daughter didn’t have it. But I had to get a piece of paper to prove it to them.
I have been diagnosed 16 years and each year I learn something new: about myself and about living well with HIV…
And then someone took it upon themselves to tell everyone about my HIV status and things erupted. The only silver lining was that everyone who had ever looked at me, breathed in the same air as me or similar went and got tested. So there was an influx of people getting tested. That’s the only bright side I can see from it because at the time it was extremely traumatic.
The facilities back then were crap, it was only when I met an organisation in a Sunday newspaper, that things got better for me. Right at the back of the newspaper, they had a little section about this organization. I don’t know why I was reading the paper because I don’t read papers. But I saw it and called CAFPH, the Centre for African Family Health. I rang on the Monday and they came and saw me on the Tuesday. From then on I have been involved in that organization. I am now on the Board of Trustees as the Women’s focus. They were the ones who got me to understand my illness, how to include my family in my journey and best share my story.
The facilities back then were crap, it was only when I met an organization in a Sunday newspaper, that things got better for me…
And I did a news story, I was on the leaflets in every clinic, I was everywhere. I still get it now, people recognising me, my face was up there all that time. I am going to change my hairstyle soon! But it was empowering. Being empowered to tell people that women with HIV can, in fact, have a baby, can be in a relationship, can prevent their babies inheriting HIV, that was good for me.
Personally, I would love to be a midwife and I am currently paying for training for that. I don’t want to be at home claiming benefits, I want to work. For a start, benefits ain’t enough to support my hair and nails. But I know how hard it can be to find work in my situation. The easiest thing to do would be to work in the HIV sector because they would know my illness, they would know my flaws, and they would have support for me. But that’d just be me wanting to be in my comfort zone. Really, I want us to forget about that and infiltrate other places, so that then those places can become supportive and understanding, and we will no longer have to beg for equal opportunities. Because we all want to work.
The thing I find challenging about empowerment is when we run the focus groups with women, they understand it and it sinks in. But then they walk through the doors and it begins to dribble away a little bit at a time. And life starts chipping away at them, making them think that people like us can’t do it, that we have to stay in our comfort zone, our safe places. We did a Valentine’s workshop recently and we had to sit in front of another person and say all the things we liked about them. Every single person I sat opposite told me how much they loved my confidence and how outspoken I was. But I wanted to say to them: ‘You could do this too, all you have to do is talk’. From a young age we have been told to stay in our lane, to support our partners, that we are not meant to be the face for anything as women. That has to change – for all women.
Nothing has been done to change people’s perception outside the sector. But things need to change there too. Starting with all hospitals introducing compulsory testing. So many people would get screened that way and it would be easy – no extra work, just an extra tick on a form. But people don’t always want to be screened for HIV. Also most of the people making the decision have a certain white privilege, thinking it won’t affect them. But HIV is not just a gay virus or a virus that affects minorities, it’s a Human Virus.
From a young age we have been told to stay in our lane, to support our partners, that we are not meant to be the face for anything as women. That has to change…
Yet there is comparative silence around some of the groups HIV affects, including heterosexual men and women. Often, we go to events around HIV and there are no women speakers. Women shouldn’t be an afterthought. At one conference, there was a trans woman who got called to speak but she didn’t attend because she had been invited as an afterthought but had her voice heard anyway by sending a letter explaining her outrage. We have some really high-quality conference but there is often a total absence of women. That has to change. I hope sharing my story loudly and repeatedly may help that to become a reality.