I first heard about HIV as a teenager in the 1980s. The big tombstone on the government advertisement appeared just as I was becoming sexually active. You didn’t really hear about sex on telly, and it wasn’t something we shared in the playground. I remember watching with my parents thinking, ‘this is a bit awkward,’ and, ‘condom, what’s that?’ My sex education was built around the AIDS epidemic. I remember fear. It made me more conscientious. I was heterosexual and promiscuous:  as a teenager you’re naturally cautious and I was just discovering what fun sex was. Then, all of a sudden, there was the potential that if I had sex I might die. It was frightening. I didn’t really understand what gay sex was. I don’t even remember warnings being specifically about gay people. It was just about sex and you could ‘get something’ from doing it. So I used a condom, even with teenage boys that were probably virgins. I reduced my risk. Some scary seeds were planted that, when it came to my diagnosis years later, affected my reaction and understanding.

I graduated from Oxford in 1989 and worked at the John Radcliffe Hospital and other jobs to save up the money to travel the world. In 1991 I started this adventure and travelled Trans-Africa, through 28 countries, but then returned to the UK in 1994. I then moved to South London to live with a boyfriend I had met in my travels. The seed of fear that had been planted manifested in this relationship I asked my boyfriend to test for HIV. He came back from the doctor indignant. ‘Why should I test? He’s refused to give me a test. I’m heterosexual, I’m not an IV user, I’m not homosexual, why should I?’

‘You’re having a test because I need you to, you’ve travelled. I don’t know who you’ve slept with in Zimbabwe, in Kenya, in countries where I know there’s high prevalence.’

He went for a test but had to fight to get it. We were both tested. There was no concern on my part. but I was doing it to encourage him. I knew my sexual history, so I knew that I was going to be ok.

We settled in Lewisham, working in community care to support people with learning disabilities as they moved from the large hospitals into the community. While institutionalised, no one had really interacted with these people. Staff had strict routines which revolved around cleaning and feeding. Community care meant they had their own home, we could cook together, go shopping, do all sorts of things. I worked with someone whose partner was diagnosed with HIV and on suicide watch.  There was stigma and discrimination: other nursing staff used hand towels to touch door handles as he had opened and closed the door. He wasn’t allowed to cook or do stuff.  I kept a distance, looking back on it.

I went travelling again as my boyfriend got a job driving we did another tour across Africa, but when we arrived in Kenya we parted company. I thought, now I’m going to go to India, the rest of the world. No more men, nothing else, now’s my time.

But then I met my husband in Nairobi in 1995, he was a beautiful man, we lived the highlife going to dance hall and safaris. From saying, ‘nothing to do with men’, I fell completely in love. He was Kenyan, a mountain guide. He was good to me and I hadn’t experienced that before. Suddenly I was with someone who was loving, kind and considerate.

I’d never wanted to live in England, even though it’s my home. I love Africa, its people, its spirit. I thought, this is perfect. He asked me to marry him and at first I said no. but we started a tourist business together and I needed a work permit. So we married and soon our son was born. life was tough but I was happy.  I got pregnant again but then in 1997 there were troubles because of the election and  a state of emergency declared. Tourists made our money, and suddenly they were no longer arriving. There was no money. With hindsight, things had already begun to break down in our marriage. I was still very much in love, but there were pressures, things change. I had the opportunity to fly back to the UK, so I took the flight at 7 months pregnant, without my husband, who didn’t yet have a passport.

It was a struggle. Because I’d been abroad for three years, I couldn’t access benefits. I had nothing: no husband, and no support.  In Kenya, I had a loving extended family, a whole village helping me raise my child. Losing that network and suddenly coming back to England, where it was freezing cold and everyone was miserable, was a culture shock. I had to fight for child benefit, for a place to live. Even when my husband got a passport, I had to fight for his visa. I moved from Wembley (my home town) to Watford. There was a wonderful women’s centre there that had funding to help me find a deposit for a house. Slowly things clicked into place. With a home and job, I could sponsor my husband. Finally his visa came through in 1998 his daughter was now a year old. We were happy for 6 months, but then reality kicked in. The streets weren’t paved with gold as he had imagined. He didn’t get job opportunities or the respect he had before. I got a well-paid job working for a safari company and he was left at home to look after the kids.

By 2000, I’d begun feeling unwell. But I was working full time. Two young children, a husband who’d started taking hard drugs and was violent. I thought it was stress related at first, then I knew that something wasn’t right. I took myself to GUM. I had tests and the results showed I had gonorrhoea and syphilis. I wasn’t offered an HIV test, because I was heterosexual. I thought I’d had a full check. Looking back, they should have given me a test.

I was prescribed antibiotics and soon felt better, I’d organised to climb Kilimanjaro as part of my work, so I went on the tour and my husband stayed with the children in the UK, I felt stronger, I reached the summit, it was a good climb and reignited my love of Africa it is an amazing continent. When I returned, I was full of hope. ‘I love you,’ I told my husband. ‘We’re going to make this work.’ I thought we could conquer the addictions and debt. Love would win overall.’

We conceived another child. My husband had evidently been unfaithful, but this was going to make us a family again, I believed it was all going to be ok. Then, at 21 weeks pregnant I was diagnosed with HIV. It was a complete shock.

I can’t actually remember how the midwife told me, but I remember her saying that I couldn’t breastfeed my child if I chose to have her. That’s when I started crying, and so did she. She’d never had to disclose an HIV status to someone before. We were in the maternity ward, where we should have been celebrating life. It was given to me as a terminal diagnosis, even in 2000. In the African life I knew, HIV was death. It was AIDS, rather than HIV. Not even AIDS, just death by ‘pneumonia’. I was advised I could have 15 years by a sexual health nurse. I was scared. All the thoughts of the adverts in the 80’s came back. I’d only known fear as a reaction.

The midwife said, ‘You have to think of your other children, of the life that you’re going to give this child if you’re only going to be around for a short time and be ill,’ and advised me to have an abortion. I’d had an abortion when I was 20. I’m pro-choice, but because the discussion of termination came with the HIV diagnosis, it was difficult. I went for a dating ultrasound scan but I couldn’t look at the screen because I knew if I saw the baby I wouldn’t be able to go through with the termination. The nurses were very quiet and sad and explained that I would have to give birth if I chose an abortion because the baby was grown. I went home crying, completely lost in a daze.

I was going to die.

I’d been trying to pretend that my life wasn’t shit. Trying to reclaim my husband, my finances, my home, my family, my life, my career, but it was all for nothing. I’d messed up, made the wrong choices, like everyone told me I had. We were all going to die.
Just before I reached  home, I felt my baby kick inside me for the first time. It was as if she was saying, ‘No, I’m here, we’re going to get through this.’ Suddenly it was very clear to me that, 15 years or not, she deserved to live. But when my husband tested positive, the next day he said he didn’t want the child. There were lies and denial. He suggested I’d had an affair. I was to blame. I’d been unfaithful, and transmitted HIV to him. But I’d been tested when I was pregnant with my first daughter, in 1998 and I was negative then. I had been faithful to my husband and so I was 100% sure of how I contracted HIV.

I was certain now that my husband was a liar who didn’t care for me or our children – and I was certain that I wanted my baby.  HIV has created a lot of clarity in my life.

He came to the birth, held my hand, supported in his own way. My baby was born and she was negative. I stayed with my husband as I believed no one else would want me and, after all, he was the father of my children. I also had a sense of responsibility about bringing him to the UK: for the life that he’d found, or hadn’t found, here. For better for worse, in sickness and in health. I’d loved him initially and love is very blind. You can put up with a lot. And I did. But things got worse. 

Eventually, we separated, but then he got TB. He was very ill and admitted for treatment at the Kobler Clinic. So he came back to live with us when he was discharged because he couldn’t live by himself. He was dependent on me for care. He got well and, of course, then all the trouble started again. I was in really dark hole. I’m still crawling from it.

I don’t have anything to do with him anymore. I’m in a good position now. I derive support from other positive women.  We have our own little tribe. I didn’t access support for a long time, due to my husband’s control.  But once I met other women, the isolation was gone. I think women are more isolated if they have HIV because there isn’t a connection or understanding as there might be in the gay community. There is so much shame. It should have greater media coverage because we’re on the increase and it’s scary. Post-menopausal women may not use protection because they no longer fear pregnancy, and it’s not talked about enough.  I wasn’t offered a test in 2000 because I wasn’t in a risk group. Women are getting diagnosed late because the GPs don’t think they could have HIV. But if you have unprotected sex, you’re at a risk.

These days I teach mindfulness practices. I was always a bit of a hippy. I’d do a walking meditation every morning when I was travelling: just walk, be where I was, in the moment. The beauty of travelling is that you can do that because you don’t have any thoughts about the past or the future. So, even though I say I practice mindfulness now, I understand that I was doing it in the past, even if I didn’t call it that. Meditation has helped stabilise me, mentally and physically, understand how to live well with this virus.. It was a long time after the diagnosis that I sought help, but it’s all been part of a journey that directed me into being well now. I think if I hadn’t had that diagnosis, I’d be dead – or at least very depressed and scared. Who knows?

It’s an irony that it was kind of a lifesaver.