Before addiction took hold I had a happy childhood. It was the fifties. My father was an alcoholic but I didn’t really notice. We lived by the sea and it was a very happy, carefree time. My mother used to make our own clothes and I loved sewing. At 14 I hand-made a Mary Quant dress. But when I was 15 she died and my father lost all his money. He rejected me because I confronted him over his drinking. I was completely homeless, with no parental guidance. I went into three children’s homes. After the third, I was left to fend for myself. I started taking drugs at the age of 15. It was 1968. It was hippy stuff:  love and peace.

I moved to London aged 17. For years it was fun. Drugs were the scene, what everybody did. I thought it was the road to spiritual enlightenment. We didn’t know where it was going to lead some of us. I just enjoyed partying. But it was progressive. We didn’t know about addiction in those days.

I had odd jobs sewing for people in Kensington Market. You could get stoned at the same time. I was talented. I made Roger Daltrey a pair of trousers. I thought I’d never take heroin because that was bad. I didn’t want to be a junkie.

  I was living in a squat on All Saint’s Road I’d inherited through Jimi Hendrix’s girlfriend. That’s when I first took heroin. I didn’t have to pay for it. I ended up in Holloway three times after on silly drug-related charges. I knew nobody with AIDS then. All I knew was the tombstone ads – and I’d heard that drug users were contracting it in Scotland. There was a running joke about syringes. ‘Don’t worry. They’re clean. I’ve just gone up to Scotland to get them.’ Just a silly joke. I never dreamed it would affect me.

On Christmas Eve 1986, my boyfriend told me he’d been diagnosed with cancer. I immediately said, ‘Don’t be silly, darling, it’s not cancer. It’s AIDS.’ Somehow I knew.

But I knew that I’d probably got it too. I had to wait until after Christmas to get tested and that was horrendous. Drug users normally run out of drugs at Christmas, so I was sick as well.

I told my family. My sisters wouldn’t come and pick up their Christmas presents. I said I’d pass them through the letter box. They said no. I told a couple of fellow drug users who were very nasty to us. There was a great deal of stigma even within that community. We had a brick through our window, and people shouting at us on the street. On the estate where we lived, kids would be chanting, ‘They’ve got AIDS, they’ve got AIDS.’ Things got around like wildfire. I found out only recently that Alan and I were blamed in Chelsea for spreading the virus. It was a very difficult time. I knew nothing about HIV other than you die. It was so new.

I had my test. I had to wait two weeks. I bonded closer with my boyfriend who felt guilty. It really didn’t matter; there is no blame.
Within that two weeks, I got arrested on a petty drug-related crime and was put in Holloway Prison. I told them I was awaiting the result because I thought it might help me get out quicker, and also because I knew so little about it and felt a responsibility to tell them. Everybody was saying how contagious it was.

I was given my diagnosis in prison. It was horrific. I asked for a cigarette and they gave me one. I think my first words were, ‘What about children?’ The woman said that if I had children the child would die and I would die.

I wasn’t there long. I was immediately put into segregation, into a cell on my own where I wasn’t allowed out except for an hour’s exercise on my own. Food was passed through the hatch. Nobody would enter. I could hear everybody outside talking about the girl with AIDS. It was horrible being on my own and hearing them all.

I was very accepting. I didn’t mind dying. But it made me think three things: I don’t want to die a junkie, I don’t want to die in prison, and I don’t want to die a victim. Rejection reinforced the rejection I’d experienced in my childhood but it was one of the reasons I got clean.
The day came for me to go to court and I was put in a cubicle. Normally in Holloway there’s a holding room where everybody sits together. I was there from 7am. I remember sitting in this cubicle all day and hearing, every so often, the guys that drove the vans to court say, ‘No, we’re not taking her. She’s the girl with AIDS and the van will have to be fumigated.’ I went in the very last van to get to court at about 4pm.

I went straight to the Kobler Clinic because that’s where my boyfriend had been diagnosed. I asked my doctor, ‘How long have I got?’
‘Well, Leigh, I can’t tell you that, but you stand a better chance of living longer if you stop taking street drugs.’

It was very empowering, in a way. If that hadn’t happened I could’ve OD’d. It was the wake-up call around my addiction that I’d needed. He referred me to the DDU, the Drug Dependency Unit, where I was given methadone. I was waiting to die. I still, like any addict, used on top of that, but the methadone stabilised me so I didn’t need to commit crimes. I started putting on a bit of weight. I went to all my appointments and, two years later, I wasn’t dead.

I realised that I was still a slave to the chemist and burst into tears at the DDU. I said, ‘I want to stop taking drugs.’ It took five months for me to be referred and get the funding for me to go into a residential rehab.

Because of the stigma, and the treatment we’d had, and everybody being scared because of media portrayal, and the mass hysteria that came with it, in my first group I said, ‘I’m Leigh. I’m an addict and I’m HIV positive, so you can all leave the room now.’
Instead, they hugged me.

I wasn’t allowed to work in the kitchen, though, and had to have my own cutlery, so it was still very isolating. I was the only person there with HIV and I think I was one of the first women they’d had. There weren’t that many women diagnosed by then.

  I was in a very closed community for 2 years before I got clean. I came out, aged 36, thinking, what shall I do?  I didn’t have a CV.  In those old days there wasn’t any support specifically for women. I needed to do something with my life and I didn’t know what. I saw a job advertised by Positively Women, now Positively UK. They’d just got funding and charitable status so it was the first employment of client service workers, and the first national charity led for and by positive women. The whole ethos was based on a positive woman helping another positive woman. I went to a support group because I thought I’d better check it out before I applied for the job. It was the first time I’d met other positive women. It was brilliant – and I got the job.

I was on the other side. Instead of going to support groups I was running them, but for the women that came, the impact and hope that meeting another positive woman for the first time gave was massive. It’s something you can’t really research, but peer support was so important in those early days because we had no other way of surviving, really, except through each other.

There were only a handful of women that were prepared to speak publicly, so I did media work and helped develop Positively Women. I was interested in drug users and prison services, but also complementary therapy – because there was no treatment.

Going from a junkie fixing in her neck four years before to becoming a client service worker and then a manager of the services was a big achievement. It was a lot to learn. I had to get my head round this new language and working for a charity. I was there for three years, from 1991-1994

The gay men were great at organisation and creating the whole movement about peer support and empowerment, but it was difficult for women because we had different issues. It was hard to talk about  gynaecological problems with men. There was no research done, at that point, on women. We never thought we’d even reach menopause age. When treatment eventually came in, I was poisoned by one of the drugs because the dosage was for a man. Everybody was learning. I was resistant to taking medication to begin with. On the AZT trials so many people were dying, I asked to be taken off it.

Around 1995 I got involved with ICW. I was a Trustee and hands-on volunteer for 7 years. I met some amazing women around the world. We held workshops in countries where they’d never heard of a HIV positive woman’s group. The beauty of it was they were helping themselves and others. Women have compassion for other women, especially in countries where HIV was seriously taboo. People have been stoned to death for being HIV in parts of the world.

One thing that really upset me was going to Russia and being shown round a Russian hospital for children with AIDS. It was barbaric. Babies were just neglected. That broke my heart. It was a very dark era. There were just so many deaths. But it bonded a lot of people and brought together such diversity.

We had to pick and choose our funerals, but it was a funeral that made me change direction. One of the founder members had written a letter that was read out at her funeral, saying she was dying happy. I thought, I can’t say that. If I was going to be next, I should go back and do embroidery, textiles, which had been the first love of my life and what I’m good at. But, just when I was given a future as combination drugs came in, I got diagnosed with cancer. “Life’s what happens when you’re busy making plans,” as I think John Lennon said. In the last ten years I’ve had breast cancer twice and my kidney removed. I broke my hip on my 57th birthday due to osteoporosis.
The human spirit rises to whatever is dealt it, but for me, and other friends that are long-term survivors, it’s having more of an effect years later. We were so busy being strong back then, holding it together, being there for each other, trying to stay alive, helping others, going to funerals. It’s taken its toll later in life.

I’m tired of being strong. I’m tired. But I’m still alive.

I’ve joined a choir, which is inspirational. We’re called Joyful Noise and we’re all HIV, so I’ve  reconnected with the HIV community although we don’t talk about HIV. We just sing and it’s wonderful. It’s healing. But it’s opened my eyes too: there’s still suffering, for the newly-diagnosed, from the stigma.