Rebecca de Havilland

Long Term Survivor, Trans Woman & Activist

They told me I couldn't have the operation and I maybe had two years to live
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Rebecca de Havilland is a trans woman born in Ireland, who had a successful career as a hair and make-up artist in Dublin and ran a model agency before moving to London and seeking gender reassignment surgery after a failed marriage. She has volunteered with the Terrence Higgins Trust and now project-manages the 56T service for trans and non-binary people in London. She also runs her own Project Bootcamp to support trans women through the transitioning process. It was only when Rebecca applied for gender-reassignment surgery that she discovered she was HIV positive. Her journey through HIV and AIDS has been a journey into understanding herself. Working as an escort to earn money for the operation, she became addicted to alcohol and drugs, but eventually managed to get her life back on track. After many years of trying to hide her HIV status from the world, she now talks openly about it and spreads the message that HIV and AIDS still pose a risk to young people having unprotected sex.

Full story

From a very young age, I knew I was trapped in the wrong body, but Ireland then was a very conservative Catholic society and I didn’t realise I could do anything about it. Fortunately, the 1970s were a wonderfully gender-fluid time to be growing up. Everyone had long hair and everyone wore flared jeans, platform shoes and make-up, emulating David Bowie and glam rock on the TV. 

 

The word ‘gay’ wasn’t used in Ireland then, you were ‘queer’. People described me as ‘light on my feet’, which meant effeminate. Even Elton John hadn’t come out then, so no one really talked about it. At 18, I bowed to the pressure to have a girlfriend. By now I knew it was possible to change sex – I’d heard of Caroline Cossey, a transexual model for Vogue and a Bond girl – but I wasn’t going to divulge to anyone that I wanted to be a woman, or that I was attracted to men. I tried to persuade myself I was just going through a phase and thought getting married would fix everything. In all fairness, my mother knew I was making a mistake and did try and stop me, but quite how the rest of my family didn’t work it out, I have no idea. I picked the wedding dress, and the bridesmaids’ dresses! 

 

In 1980 my daughter was born, and my career as a hairdresser was beginning to take off. Within two years I had a job in the top hair salon in Dublin, and styling for fashion shows and photo shoots. At the pinnacle, I did hair and make up for Johnny Logan at the Eurovision Song Contest, the year he won it in Belgium: I was famous and sought-after. But inside I was suicidal. I had confided in my wife I was attracted to men; she threw me out and stopped me seeing my daughter, which broke my heart. I came out as gay in a very colourful rainbow in 1983, but sex with men felt as uncomfortable as sex with women. I didn’t seem to fit anywhere. 

 

I moved to London to further my career, discovered burlesque and drag at Madame JoJos, met trans women and, for the first time, understood who I really was. Eventually, I began the process of transitioning, taking hormones and getting approval from three psychiatrists. At that time, it was necessary to be tested for HIV before the surgery. It didn’t occur to me for a moment that I might have the virus; I thought whoever’s up there couldn’t be that cruel. 

 

When I was called into the room for my results, I knew immediately there was something wrong. They told me I couldn’t have the operation and I had maybe two years to live. My whole world collapsed. 

 

My family in Ireland couldn’t cope and it drove a wedge between us. I remember overhearing one of my relatives say: “God, he would do anything for attention.” At the time I was too selfishly bound up with myself to understand what a huge shock it was for them, and I was angry they weren’t more supportive. 

 

There used to be an unfunny joke doing the rounds that if AIDS doesn’t kill you, the meds will. I was on AZT for a while and watched friends die, but couldn’t bring myself to tell them I too had HIV. I’d lost my career, afraid to go back to Dublin,I was broke, living in London as a woman, and the only way I could raise money for surgery was to become a high-class escort. After the operation in 1991, I looked fabulous, but the clothes and handbags cost money, so I began doing ‘extras’, discovering that if I drank or drugged, it numbed me enough not to care what I did. I even ran a brothel in Amsterdam for a while, but champagne and cocaine gave way to crack and heroin and I was working the streets, doing twenty quid tricks down alleyways in Soho. My family thought I was dead, because I couldn’t face going back to Ireland, ashamed of the mess I’d made of my life. I had zero self-respect, and very little memory of the next five years. I was skinny and gaunt, but people assumed it was my addiction. I remember catching sight of myself reflected in a shop window and thought it was some raddled old witch sneaking onto my patch to steal my punters. 

 

For a while, I was on combination therapy, but the meds had to be kept in a fridge and I didn’t want anyone I shared a flat with to know I had HIV, so I stopped taking them. Every so often I would stagger into a clinic to get cleaned up and go on medication again. For a while, all would be well, then the whole sorry cycle would start over. With addiction, you need to hit rock bottom before you can change but, for me, there always seemed to be further depths to plumb. When I woke one morning on the floor with one broken hand and a bottle of vodka in the other, and no idea how I’d got there, I thought I’d hit the bottom and took myself to Alcoholics Anonymous. But I was wrong. I managed six months sober, then just couldn’t do it anymore. I bought a half bottle of vodka, swallowed it along with handfuls of anti-depressant tablets and texted a friend for help. I woke two days later on a life-support machine in hospital. No sooner was I out, than I tried to buy another bottle of vodka and finish the job, but this time I was sectioned and committed to a mental hospital. That, finally, was rock bottom. 

 

Only then did I grasp that the AA programme requires not just sobriety but honesty. You take a long hard look at yourself. I realised I’d blamed anyone else for all that happened, instead of acknowledging my own part. I went back to meetings and haven’t touched a drink or a drug since. 

 

What happened next is almost like a fairy story. I re-established contact with my sister, went back to Ireland and met old friends who were opening a burlesque nightclub, where I then worked as Lady V on stage, looking like Big Bird, feathers coming out of everywhere. By an extraordinary coincidence, one night I discovered that my daughter, whom I hadn’t seen since she was a child, worked there selling tickets. We were reunited and I met my granddaughter. 

 

It seemed a happy ending, but although I then started a successful model agency in Ireland and published my life story, I had one more problem to conquer: I still wasn’t able to be honest about my illness. I was in denial about HIV even to myself. I thought the truth would lose me my newly discovered family. I ran out of medication, and thought I must be safe to stop taking it since my last viral load test had shown I was down to undetectable levels. For almost a year, I ignored the signs: my hair fell out, my teeth were rotting, I was painfully thin and plagued with kidney infections. Eventually I was hospitalised with pneumonia in Dublin and told I had six months to live. 

 

But after everything I’d been through, I refused to accept it would end like this. I sought a second opinion in London and was put on a clinical trial for some new AIDS medication. That summer was hell. I was living on benefits in bed-and-breakfast accommodation, I wore a wig, I had to have all my teeth removed, the meds didn’t seem to be having any effect, and I knew I had only myself to blame for it all. But slowly, slowly over the next two years I began to improve. I promised myself that if I could reach undetectable levels of virus again, I would completely change my lifestyle.

 

At Christmas 2015, my viral load test showed undetectable. I signed up for the Back To Work programme at the Terrence Higgins Trust, trained in sexual health, and began volunteering with Positive Voices, which educates young people about HIV. When I finally told my daughter I was HIV positive, she said that she loved me and was proud of me: “Go and shout it from the rooftops.” 

 

I’ve been asked, now you’ve come out about having HIV, how do people treat you? I joke that they still run, but not as fast. But as I say to people – if you saw me walking down the street, would you think in a million years I have HIV? They say no – I look pretty good for a woman in her sixties. And then the penny drops. They realise you can’t tell who has the virus and who hasn’t. It could be your new boyfriend, your girlfriend. Anyone can be infected.