In 1986 I was sitting in a lecture at Portsmouth University. My head of department called my name. ‘You need to go to the doctor straight away.’

My GP said, ‘There’s only one way to tell you this. You’ve got AIDS. You’re probably got 5 years to live. If you’re in an accident, be careful with your blood. Don’t get pregnant.’

I was 20. I didn’t even know I’d had a test. I’d had my blood taken a few months previously over the Christmas holidays at a hospital near my home in Wales, but I hadn’t consented to a test. I couldn’t really take it in. I don’t even remember asking any questions.

My housemates had already left for the end of term. I went to a shop and bought brandy. My sister got straight on a train. The only person I saw in between the doctor and my sister was my landlord.

‘Oh, don’t worry. Lots of innocent people like nurses get it.’

It was a strange thing to say and it didn’t help.

The next day I returned to Wales to the hospital. They didn’t explain why they’d taken my blood, but they did say that I was the first positive woman in Wales. They hadn’t known what to do. Lots of people had found out before me. My prime concern was that loss of control about who knew.

I didn’t even know enough about it to be frightened – yet. As time went on, everything I read was accompanied by horrific images. I was terrified, not necessarily of dying, but of dying with AIDS. That scared me more: looking like a person with AIDS. In a way, nothing had changed: I was still healthy. But everything had changed. I thought, I’ll never get a job, never have a relationship, never have children.

Whenever I told anyone, I’d say, ‘Please don’t tell anyone else.’ I realised that everybody did tell somebody else. You can’t ask people to keep a secret like that.

Back at the Portsmouth hospital, again, I was the first person they’d seen. It’s strange, when you’re 20 years old, to become the first. You don’t want to be the first.

They were reassuring, ‘We’re pretty sure it’s a false positive,’ and took my blood again. It wasn’t a false positive. Then they didn’t know what to do with me. I didn’t have any information. There was nothing about women.

I phoned Body Positive’s helpline. They hadn’t met other women in my position either. I felt so isolated.

I thought, Is this when I kill myself? It felt like the kind of news where you should consider that.

I realised that I didn’t want to kill myself.

I went to London, where there was somebody that was actually working in HIV: Dr Anthony Pinching at St Mary’s.

I was due to go to Africa for a year as part of my course. It’s an entry requirement to have the yellow fever vaccine. I couldn’t; as a live vaccine, it was contra-indicated. Tony Pinching was the first person to give me some hope.

‘There’s so much we don’t know about this. You’re young. Your immune system still looks strong. If you really want to go, I don’t think the vaccine would do you much harm.’

If I didn’t go, what would I do?

I had the vaccine at the School of Tropical Medicine and waited to see whether it would have awful consequences. It didn’t. I left for Africa. It was good for me to get away. It was the year of the government campaigns, the Tombstones. Having a year by myself was the best thing I could’ve done. My family were supportive, but didn’t really know how to support me. I couldn’t talk to them about what I was scared of. I couldn’t think long-term or make plans. Being a student, you can just go from one term to the next. That’s how I functioned for a long time. I graduated in ’88, and moved to Manchester. Finally, my GP had heard of another woman in the north-west. We met at a bus station. I was terrified. I imagined seeing this very thin person, maybe in a wheelchair, looking very ill. Instead, she was blonde, bubbly and lovely. For the first time in nearly 3 years, I talked about my feelings and fears properly. Just hearing her talk helped me to find the words.

We drove down in her car to Body Positive in Earl’s Court where they gave us the details of Positively Women. They were inspirational. Those women became my friends. They were the only organisation that were really doing anything for women at the time.

I did a PGCE in Lancaster and taught in Hong Kong, travelling in China and Vietnam. When I returned in 1991, I got a job as a languages teacher.

I switched hospitals. I decided I wanted to see a woman. Margaret Johnson had just started a clinic at the Royal Free. For the first time, I got results. At St Mary’s they’d look in my eyes, feel my lymph nodes, but they never gave me any numbers. My CD4 count was very low – about 100. I started taking AZT, and Septrin and reacted quite badly to both drugs, which meant that I was having to take time off work to go to the hospital. I told my headteacher why.

I lost that job as a teacher, because they thought I was a risk to young people. They phoned to say, ‘We think it’s better if you don’t come back after half term.’

I didn’t want to have to fight, and I didn’t want to have to go public. I couldn’t  face a court case. The stigma of HIV meant I was prepared to go quietly without a fuss. It felt awful. I didn’t finish my probationary year and applying for other teaching jobs became difficult. It messed up my career.

In July 1992, I found myself in Amsterdam at a week-long meeting with women from all over the world. More than 20 countries. All living with HIV. It was amazing!

The one woman I’d met in Manchester, had done a lot. The few women I’d met in London – the Positively Women – had been amazing. But suddenly, meeting all these women with such different stories and experiences, helped me to find my voice.   

  And my anger. 

After hearing women who’d lost their homes, had their children taken away from them, been in prison, been forcibly sterilised, all living with HIV, I remember a moment of thinking this is wrong. This is nothing to be ashamed of. We shouldn’t be treated like this. It made me realise how fortunate I was.

Although it had been a very difficult time and was too painful to think about, I was lucky to have been diagnosed in this country. We founded a network, The International Community of Women Living With HIV. I set up the coordinating office. Positively Women gave us a desk in their office, near Angel, and we could use their fax machine. We wrote letters to women, kept the network going, tried to expand it.

Women that had been in Amsterdam went home and set up support groups like Positively Women in their countries: Uganda, Kenya, Malawi. It was an exciting time. I’d found my voice – and my activism. There was still a feeling that women with HIV were exceptional; that the only women that got infected were sex workers or people who injected drugs. There was no recognition that women were simply at risk through unprotected sex. Yet women were much more at risk of unprotected heterosexual sex than men were. Wel just wanted to raise awareness.

Positively Women had a campaign called Women with HIV are women like us. At WHO, they were writing their first strategy on women and AIDS. Around the table were researchers, mostly working in different countries with sex workers. I was there, saying, ‘Actually, women with HIV are everybody. Anybody.’ A few years later it was recognised that the biggest risk factor for women in sub-Saharan Africa was simply being married.

The gay men’s groups were amazing. We got support from them. I felt they were lucky, having each other and having that community. Of course, they weren’t lucky at all. It was horrendous. But women’s issues were different, and nobody had any answers when it came to things like pregnancy.

Initially, I’d been told ‘don’t get pregnant’. AIDS would progress more quickly. I’d die, and my baby would die.

But women did start getting pregnant and their babies didn’t die. They didn’t progress to AIDS. We were learning. Learning by being. I was in my mid-30s when we decided to try. My first daughter was born in 2003, and my second in 2006.

Money was difficult. We didn’t have any. In the first two years of ICW, we got one grant of £16,000 from Glaxo. It just covered the computer, fax machine and communication costs. In 1994 we got EU funding for a peer-interviewing project. The money didn’t come in for proper women’s work until the early 2000s, when the ‘feminisation of Aids’ happened and women were finally recognised as being in the majority when it came to people living with HIV across the world.

Early on I was invited to the Concorde Study. ‘You could do your bit for humanity.’ I said no. I was glad I didn’t do my bit for humanity for that trial, because many people developed resistance to AZT. I didn’t have any exposure to treatment until 1992. The only drug I used was nebulised pentamidine to prevent PCP once a month. I had candida in my throat and eyes. I went on a yeast-free, no sugar diet which helped symptoms for a few months. But I was getting iller with PCP, recurrent pneumonia, shingles.

In October 1996 my doctor said, ‘We’ve got new drugs. We think they’ll help. We don’t know much about them, but they’ll give you a few more months.’

My CD4 was zero. ‘The next infection you get could be your last. So, try these.’

At the ICW office we were all having the same conversations with our doctors. Nobody wanted to take them. We were terrified. When people are very ill with cancer and don’t want chemotherapy, it’s because they want their last few months to have some quality of life. We were thinking of it like that. What if the drugs made us feel awful and then we died anyway?

My partner, a bio-chemist, researched them and encouraged me. I took them for the first time on Christmas Day with a glass of champagne. It felt momentous! Within a couple of weeks I felt a change. I felt stronger. I’d been sleeping 16 hours a day. Suddenly, once I’d started taking these drugs, I had energy!

  My viral load had begun to go down. It took a lot longer for my CD4 to climb up. But they were horrendous drugs to take. A combination of protease inhibitors three times a day, but you couldn’t eat before or after them. There were nine hours a day that you couldn’t eat. You had to wake up really early to get in your first dose. I’d have to walk the dog with bags for the dog poo and bags for me to throw up in.

I stayed on that combination until I collapsed while speaking at a meeting at the UN. The drugs had calcified in my kidneys. 

As well as vomiting and headaches, they caused lipodystrophies. My body changed shape completely. I lost weight on my arms, legs, buttocks and face, but I gained weight on my neck, a big tummy and a buffalo hump. Somebody actually came up and prodded me
‘I’ve never seen a buffalo hump before!’

I’ve had plastic surgery. Lipodystrophy twice, my hump removed once, my face filled. The changes were distressing. I looked in the mirror and didn’t recognise myself. But it felt like a small price for survival. The drugs kept me alive.

Most people in the world didn’t have access to drugs. We had to continue demanding treatment for everybody. Until that point, we’d all been in the same boat, so there was a huge sense of solidarity amongst women wherever we were in the world. Suddenly we were in two boats – I was in the boat with access to treatment while women were continuing to die in huge numbers elsewhere. That became the driving force of activism.

I met a woman, just pre-Covid, who was really shaken by her diagnosis. I explained that being diagnosed with HIV today, you have a normal life expectancy, you can have unprotected sex, you can have children.

She said, ‘If it was cancer I’d be able to tell people.’

I, too, had wished it was cancer in 1986. Four decades later we’re having the same conversations. An HIV diagnosis today is much better than a cancer diagnosis in terms of health and life expectancy.

But it doesn’t feel better.