It’s not about ‘good’ people with HIV, and ‘bad’ people. An illness doesn’t know who you are when it infects you.
Emma Cole was infected with HIV in 1991 when a condom failed. She has volunteered, campaigned, and worked to raise awareness of HIV ever since. She began talking publicly as a volunteer at Positive Youth in 1992, before launching her own 'Positive Voice' talk for schools and businesses in 2002. She speaks annually at approximately 100 schools across the UK and Europe.
Full story
As a white, heterosexual young woman, growing up in rural England, life was very conservative. I did not believe people like me got HIV. I was so wrong.
In the late ‘80s I remember watching a documentary on Terrence Higgins. I thought, those poor people! I’m going to have to do something to help. I came to London to do my degree in 1991 and found a charity, Body Positive. I signed up to volunteer, not thinking HIV was ever going to impact on me personally. I was in ‘help’ mode. I’d done a training course with BP before I met the person who I was to contract HIV from.
And then I got my diagnosis.
Ian knew he had HIV but didn’t tell me until the condom failed.
My first thought was, ‘you can’t be, you look normal’. It’s horrific to think I thought that way, but the only images I’d seen of AIDS had been stick-thin, ill-looking people. He was Mr Drop Dead Gorgeous from Hampstead Garden Suburbs, so my brain didn’t equate him with HIV.
People often say, ‘It can’t have just been one time!’ But I know for certain because prior to meeting Ian, I’d been a regular blood donor. After 1985, all blood donations in the UK were tested.
When I phoned the National AIDS Helpline, they said there was a very small risk of infection. I thought they were joking. Surely you had to have had sex hundreds of times, not just once?
‘But if you’re anxious, take a test.’
I remember marking 12 weeks ahead on my calendar. By week 11, I thought, what difference is a week going to make? I’m alright. I used the same-day testing service at St Bart’s Hospital, the only one in London at the time. I didn’t give it a second thought.
I was diagnosed on September 11th, 1991. When the counsellor told me the result I couldn’t believe it. I honestly thought they’d contaminated my sample with someone else.
I thought my life was over.
The consultant said, ‘If you’re lucky you might live 8 or 10 years.’
I was 22. If I got 8 years, I’d just make 30. My dad had died at 34. I didn’t want to die young like he did.
I stayed with Ian. He didn’t set out to infect me. It was never a deliberate act. I will always see it as an accident with huge consequences.
At first I was on income support, which in London was about £26 a week, a ridiculously small amount. As I was sofa-surfing I was able to get a room in a shared housing scheme for women with HIV.
After 4 months, I got a job working at the local council. Initially it was a 3-month contract. I thought, I hope I survive three months so I can fulfil my contract.
I went into practical-mode, got into counselling at Red Admiral, went to Body Positive, joined support groups. Ian put his head in the sand in denial. Our coping strategies were poles apart.
I was going through the motions but not really acknowledging this was my life. I don’t remember being angry, although some of the artwork I made at the time was quite aggressive. It was coming through in different ways, if not me screaming and shouting. 24 hours a day I was thinking about HIV. I remember the first day I got to lunchtime and I hadn’t thought about having HIV. Then a whole day. It was a huge sense of relief because, in those first few months, it was overwhelming.
But I was trying to cope for two of us. After a year, I needed some time out. Sadly, Ian’s health spiralled downhill. He got AIDS-related dementia and died within 18 months of my diagnosis. He ended up in Patrick House, a hospice in Hammersmith. None of Ian’s family knew he was HIV positive. Even his close friends. I used to visit every day after work. It was horrific. He couldn’t recognise me anymore. He’d lost most of his body weight. He was skin and bones. If you’ve not actually seen someone dying of AIDS, it’s not like the movies. Tom Hanks in Philadelphia looked quite fit in my eyes.
The whole process of Ian dying was terrifying. I thought, it’s going to be me next. There was no hope. AZT was the only drug around. I saw people start on AZT and die and I thought it was the drug. In Positive Youth, there was a haemophiliac who’d had it since he was a child. That was my glimmer of hope. If he had lived 10 years, it was possible. But I didn’t really think I’d make it through a decade.
My health was relatively stable, but I was working to the 8-10 years timeframe. At any point I thought I was going to get sick and die. To prepare, I bought my own coffin. I saw an article about pensioners who bought them in advance. I got the cheapest option which was flat-packed and had to build my own coffin. It’s still here in my living room.
I visited Mum to tell her. I couldn’t just blurt it out, so I told her about the voluntary work to open up discussion. When I explained it was an AIDS charity, she said, ‘Why are you bothering with people like that? They’ve got everything they deserve.’
So I didn’t tell her face to face. I wrote a letter. She refused to let me go back to the family home. She didn’t want my sisters “catching it”.
Ten years into my diagnosis, I was approached by the BBC to be in a documentary about positive women. All my mum could say was, ‘Why do you want to go on TV and embarrass the whole family?’ We ended up in an almighty row. She said, ‘If you go ahead and make the programme, that’s the last you’ll ever hear from me.’ I’ve not heard from her since. When people say HIV’s not so bad today, I think, if I had any other illness, I’d still have my mum in my life.
I felt isolated in the early years. At Positive Youth, for the first two years, I was the only straight, white woman. Most of the support that got me through came from gay men. I will forever be thankful to that community who’d had the experience before me and were able to guide me.
In the early years, you didn’t get access to anti-retroviral treatment until your CD4 count dropped below 200. In my case that took 8 years. From 1991-1999 I wasn’t on any meds, although I was paranoid that every cough, every cold, was pneumonia. My consultant said, ‘Stop stressing yourself. That’s going to kill you more than the cough and cold.’
By 1999 my CD4 count had gone down. You got your bloods every three months. I remember the doctor saying, ‘This is the time.’
My biggest fear was the number of pills. In support groups it was a running joke who took the most daily. ‘I’m on 30.’ ‘That’s nothing! I’m on 45!’
I told my doctor, ‘It’s got to be less than 10 pills, or I can’t manage.’ It took me until I was 20 to learn how to take medicine with water. I used to have to stick it in a teaspoon of jam to swallow!
I can’t remember the original cocktail. I started it on a Friday night and took the first dose with a glass of champagne.
Within 48 hours I was rushed into hospital, suffering an allergic reaction to Abacavir. I went from being perfectly well with HIV, to taking the meds and being hospitalised, so my idea of treatment was tainted from the start. Every side effect going, I had. Nausea, vomiting, diarrhoea, head-to-toe skin rash. In the early years, we were learning at the same time as the doctors. There was no expert to go to for advice. They took out the Abacavir. We were all guinea pigs. None of the drugs had been studied long-term. I think I had the allergic reaction because so few women were in the early clinical trials, so they had no experience in female bodies.
I’m a football fan, QPR, and I was on the tube after a game. I suddenly thought, I’m going to fart and I’m not confident it’s just wind. If I shit myself on a tube, with all these football fans around, that’s my life over! I knew I couldn’t stay on the meds. I lasted four months and that was it. It was quality of life I wanted, not quantity.
I stayed off the meds for another four years until I got suspected PCP. I was in Australia when it happened, thousands of miles from anyone. Even though I’d been hospitalised before, I’d never been put on oxygen. It seemed a much more traumatic experience. I remember the consultant in Sydney, warning, ‘If you don’t go back on meds, you’ve probably only got a year left.’ It was the wakeup call. My football team had just got through to the playoff finals. I remember thinking, I can’t die. I’ll miss a season of Premier League football.
I used to do talks with a young gay man in schools for Positive Youth. I was seen as an ‘innocent victim’ which I hated because it implied that he wasn’t. It’s not about ‘good’ people with HIV, and ‘bad’ people. An illness doesn’t know who you are when it infects you. Sometimes the assumption was that I must be a lesbian. Some people thought only gays got HIV. You had to educate people constantly.
I was fortunate that Body Positive sent me to a church group for a World AIDS Day event where I met the amazing Sister Dorothy Bell, their AIDS Coordinator for the archdiocese of Southwark: the maverick Catholic nun who put condom posters in churches. Through her I was able to get into schools alongside her. We became quite a double act. Now I speak at about 120 schools a year around the UK and Europe. Young people’s knowledge hasn’t changed. The questions are still the same. Things like, ‘Why do gays get it more?’ There’s still the perception that it’s a gay disease. The minute I disclose, there’s an intake of breath and people react. I’m still waiting for the day where people just go: And? So? We’re not there yet, even after 33 years of sharing my story. I don’t want the history forgotten because we’ve only got the progress today because of all of those hundreds of thousands who died. We still have basic education to get across to the general public.
I remember one girl who’d lost both grandparents to AIDS. She said, ‘You’re the first person I’ve been able to tell this to. As a family we’re not allowed to say what they died from.’ If that burden is still on a new generation of young people, we’ve got much work still to do.
I don’t think about the future because I don’t expect to be old. I genuinely don’t think we have enough evidence of the long-term damage these drugs are doing. I hope I’m proved wrong, but I think if HIV doesn’t get me, there’ll be all the multiple co-morbidities that come with being a long-term survivor.
When I started work, the HR department told me I couldn’t pay into the works pension. It wouldn’t pay out if I died of AIDS, (untrue), but a big concern I have is future care needs. In a care home that doesn’t understand HIV there will be stigma, and isolation. Many female long-term survivors like me don’t have kids. We were told not to. We were told to terminate pregnancies in the early ‘90s. So we can’t think family will support us.
The 10th anniversary of my diagnosis was 9/11, 2001, the Twin Towers terrorist attacks. It was a second illustration of how life can change in an instant. Any day after was a bonus if I was still alive.