How I cope with HIV

There is nothing more terrible for a mother than to realise she may not live to see her child grow up. I was only 32 years old when it happened to me - and I can still remember the paralysing horror I felt. The moment which was to change my life for ever was heralded by a simple knock at the door. My GP stood on the doorstep, looking grim.

'Caroline, I know you said you did not want to know the result of your test - but you are too intelligent not to know the truth. You have HIV.'

His words seemed to erase my future in seconds. At that time, 1986, the prognosis for a person infected with HIV was five years at most. So far as I was concerned, I was being handed a death sentence.

My first thought was for my daughter, Lee Sian, then three. Who would look after her when I died?

An even worse thought followed. What if Lee had the virus, too? To my enormous relief, the doctor said that because I had contracted the illness since she had been born, the risk of infection from daily contact was minimal.

At the time, I was also in a relationship that had been going on for about six months. I realised I would have to tell Peter, the man I had been seeing, and that he would have to be tested, too. How could I possibly find the words to tell him?

The implications of this discovery, on every level, were too awful for me to fully comprehend. I felt absolutely terrified. How on earth had something like this ever happened to me?

Two years earlier, after my marriage to Lee's father, a film director, fell apart, I went to Australia to try to get over the trauma of the breakdown.

While there, I spent a lot of time with a male bisexual friend who acted as a tremendous source of support. Being extremely emotionally and physically vulnerable, it was not surprising that one evening, after having had far too much to drink, we ended up in bed together.

Next morning, we both realised as soon as we woke up that our relationship had no future. Our sleeping together was just a mistake that we both decided to try to forget. I didn't know it at the time, but I was left with a reminder of that evening I could never forget - infection with HIV.

I first became ill with a low-grade infection about ten months later when I was back in London, sharing a flat with another single mother. I noticed that my glands were swollen and I was feeling increasingly tired by the end of each day.

But being a busy working mother, it was easy to convince myself that I was feeling run- down as a consequence of living such a hectic life. So it wasn't until two years later, in 1986, during a routine smear test, that I mentioned my symptoms to a locum GP.

He decided to take some tests, including one that he told me was for glandular fever. When I returned for the results, he said they were negative but that he had also taken one for HIV.

I was livid that he could have done such a test without my permission. Although I was aware that many of my symptoms - such as tiredness, temperature rise and swollen glands - were consistent with HIV infection, I never for a moment seriously believed that something like that could happen to me.

Two weeks later, my own GP - who had been away when I had the tests - made that fateful visit to my house. He drove there to confront me, against my will, with the truth.

Today, I am grateful for his care and concern. If I hadn't known then that I had HIV, I wouldn't be alive today. But at the time, I was both devastated and angry that the decision had been taken out of my hands.

Knowing the stigma attached to HIV in the Eighties, I decided straight away not to tell my daughter until she was old enough to understand. To be honest, I was terrified of telling anyone. The only people I trusted enough to share my secret with were my partner, Peter, and my closest friends.

Peter took the news much better than I had expected. He also took a blood test. But after two weeks, to our great relief, it came back negative. He was in the clear.

Not only that, but he also wanted to continue seeing - and making love to - me. Although we would obviously have to use condoms from now on, I felt this showed the strength of his commitment and felt really cherished.

But in other areas of my life, I was not really dealing with the issue at all. For six months, I tried desperately hard to pretend that nothing had happened. Looking back now, I was in complete denial about my diagnosis.

At work, it was impossible for me to concentrate. I felt as if there was a sheet of glass between me and the rest of the world. Thankfully, my business partner was wonderfully supportive and covered as much as she could for me.

Day-to- day life became suddenly unbearably poignant, looking at my child and wondering how and when I would tell her that her mother was going to die. I kept thinking that if I had been a victim of cancer or MS, at least there would have been no stigma attached to my illness.

I was all too aware that being infected with HIV was a moral issue as well as a medical condition. While at home with my daughter, I began to plan how I could work to change this. I realised that, although I had often felt like the only woman on Earth with the virus, there had to be plenty of other women out there with HIV who, like me, were trying to live and look after their families.

This led finally to the launch in 1988 of Positively Women, a charity I co-founded with Sheila Gilchrist and Kate Thomson, with the support of Princess Diana.

Advertisements began to appear in women's magazines, and slowly women began to contact us. News of a support group encouraged people to speak out, and celebrities began to pledge their support.

In the meantime, though, my relationship with Peter was beginning to faiI. Deep down, both of us knew that we were not right for one another but we did not want to face up to it. Then, in 1992, I found myself unexpectedly pregnant.

I did not know what to do. Although my relationship was Peter was problematic, I did not want to have a termination and discussed with my doctor whether it would be possible for me to give birth to a healthy baby.

I was told the risk of our child being born with HIV was between ten and 15 per cent. Added to that was the agonising wait some women had to go through even after their baby was born before they discovered whether their child had been born with the virus.

For ME, the risk was too great to take, and I decided, with great regret, to have a termination and to be sterilised. It was a very sad time for both Peter and myself.

Looking back, it was probably the right decision, though, because our relationship continued to deteriorate and, a year later, I started to become very unwell myself.

By the early Nineties, I was suffering from chronic fatigue, heavy night sweats, hair and weight loss, as well as minor but distressing skin infections. Clearly, my immune system was no longer coping with the virus.

Finally, in 1993, when Lee was ten, I decided to stop work and give my daughter what little time and energy I might have left. I also decided the time had come to tell Lee the truth about my condition. Although she knew about my work for Positively Women, and often came into the office, it had never occurred to her that I, too, might have the virus.

One evening, I sat her down and said: 'You know those women at the office with HIV. Well, I have it, too.'

Lee burst into tears, and then immediately apologised for crying, which made me feel dreadfully guilty. She then smiled bravely and said: 'What can I do to help, Mummy?' All I could do was hug her, feeling glad I had such a wonderful little girl.

Shortly after this, Lee moved schools. I made sure that both her teacher and a counsellor at the school were aware of my HIV status, and that Lee could get support if she needed it. It wasn't long before her classmates knew.

Another mother approached me the day after Lee had told her friends about me, and suggested we should 'have lunch to discuss the issue'.

But I said: 'What issue?' and continued: 'If you mean the fact that I have HIV, that is my issue and certainly nothing to do with you. There is no threat either to my daughter or yours.'

Looking terribly embarrassed, she hurried away. To my great relief, neither she nor any other parent at the school ever mentioned the subject again.

Fortunately, Lee's teacher was very sensitive and made sure that the whole class was given a lesson on HIV, so that all the children clearly understood it was not something they were about to catch from my daughter.

When Peter and I decided to go our separate ways in 1995, I did not think that I would ever meet anyone else. I felt both emotionally and physically the lowest I have ever been.

Worse was to follow a year later when I became dangerously ill with E Coli septicaemia. I thought I was dying, but with a combination of two drugs - D4T and 3TC - I began to put weight back on and my strength returned.

I met Mark (McGann) at a friend's barbecue party in the spring of 1998. From the moment we were introduced, we found it really easy to talk.

Over the course of the following year, we became closer and closer to one another. I realised I was falling in love with him but wondered how I would ever be able to broach the subject of my HIV. Although we were close, we had not made love.

I rehearsed the words over and over in my mind, but remained terrified of actually telling him. I did not want to lose Mark, whatever happened.

Then, in 1999, Mark went off on a holiday to Peru, while I went off to South Africa. Being apart suddenly made us aware how much we missed one another.

Then one night, while Mark was still away, I was talking to his brother, the actor Joe McGann, a long-time friend who knew I had HIV, when he suddenly remarked: 'You and my brother are made for each other.'

I answered immediately: 'Yes, I know, Joe. But how on earth am I going to tell him?'

Joe laughed and said: 'Do you think he doesn't know? He has known since before he ever met you.'

The relief was overwhelming. I did not need to confess. Mark already knew, and - more important - he didn't mind.

After that conversation, I could not wait for Mark to come home. He rang me the moment he got back and I asked him over for dinner. An emotional evening followed as we both told each other how we felt about each other, and the fact that I had HIV.

That night, he stayed with me in my bed. But we did not make love until several months later. I wanted to give Mark time to consider the step he was taking, and to allay any anxieties he may have had about HIV before entering into a physical relationship.

During the intervening weeks, while still staying with me, Mark found out everything he could about the virus. He was told that as long as he always used condoms, the risk of infection to him was low - though, of course, no doctor could give him a 100 per cent guarantee.

Mark, to my joy, quickly made up his mind. I shall never forget his words: 'The odds are good enough for me. I love you, and will take the risk that goes along with that.'

To my daughter Lee's great delight, we moved in together and married a year later. Mark was 39 and I was 46.

At the time of our marriage, we investigated the possibility of having children. I knew that my sterilisation could be reversed, and also that medical knowledge about the virus and the drug treatments available had changed radically during the past ten years.

Provided you give birth by Caesarean and don't breastfeed, a baby born to a woman with HIV can now be free of the virus. I was very excited at the prospect of having another child with the man I loved.

Sadly, although my HIV status was no longer a barrier to pregnancy, my age then - 46 - was.

Mark says he doesn't mind, and that Lee, who loves him dearly and who is now at university in the U.S., is the best daughter any man could ask for.

Thanks to the triple-combination drugs I have been on since 1998, my health and immunity from infection also remain good.

The only downside to my treatment has been the toxic sideeffects of one of the drugs keeping me well, which has resulted in a dramatic change to my body shape, causing a re-distribution of fat from my limbs to around my middle.

Naturally, this was difficult for me to accept as a woman, and has meant me having to re-plan my wardrobe. I gave away my figurehugging designer dresses and now resort to more practical clothes.

But Mark is the best support any wife could have, constantly reassuring me of my attractiveness

We have a very happy, peaceful life together now, socialising with a few close friends and spending a lot of time walking in the countryside, enjoying one another's company.

Mark has a very open attitude towards my HIV, and he would have been happy for us to speak out both about my HIV, and our love for one another, from the start.

It was I who feared any possible reactions of ignorance or hostility. But the more people find out about the virus, the less they will be afraid. Some day, I just hope that all women with HIV will be as accepted and loved as I feel today.