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'I've HIV, but I love life, with my partner and son'
Belfast Telegraph
November 30, 2007

http://www.belfasttelegraph.co.uk/features/features/article3210765.ece

With 84% of HIV positive people viewed negatively by society, the Stamp out Stigma campaign is marking World Aids Day tomorrow, with TV adverts featuring local celebrities and asking people to challenge their prejudices. One mum, Juliette, from Belfast, tells what life is like in Northern Ireland for people with HIV

A diagnosis of HIV is devastating and terrifying - there is no cure, after all. But it doesn't mean that life must come to an end there and then.

It is 11 years since I received that shocking news and I have remained as fit as ever and have been completely symptom-free. I'm now in my late 30s and have a beautiful son, who does not have the virus, I'm in a loving relationship and work in a job which I enjoy. The only reason I've asked for my identity not to be disclosed is to protect my child.

I want to get the message across that you can live life to the full after a diagnosis of HIV and that those with the virus must seek support and help and talk about their situation.

Do I wish things were different? At times, of course I do. But I have no fears about the future and hope that by speaking out others will be encouraged.

In my late 20s, I had been working in Zimbabwe for a couple of years and was in a relationship with a wonderful local man. Then he became ill and when TB was suspected we were extremely worried because he'd had the BCG vaccine. Something must be seriously wrong, we realised, to have destroyed the effects of the vaccine. We feared the worst and in the meantime I was tested. Devastatingly, I was found to be HIV positive.

The first thing I thought was 'No husband, no kids' - this was a common reaction, apparently. I was afraid that I'd never be able to have a relationship again or have children. Although I was enjoying travelling I'd always imagined that one day I'd settle down, get married and have a family. I was also afraid of being robbed of being a woman, that I wouldn't be able to express myself sexually.

I stayed in Africa until my work permit ran out and although I really didn't want to come home, I did. My boyfriend died six months later of Aids - I just can't imagine what he went through - he was very ill during that time.

I told my family a few months after my diagnosis and I'm fortunate that they have always been very supportive.

I've never experienced any symptoms and my immune system has been constantly strong over the past 11 years.

Who knows what star we live under? Doctors don't know why I've never been ill over the last 11 years, and they don't know when I might become ill. But for someone who is diagnosed it's not unusual to go for so many years without being ill.

A big issue surrounding HIV is the stigma associated with it, and how people in society are treated or discriminated against because of it.

For years, I lived as if there was a thick glass wall around me. I was very aware of other people and would compare myself to them, wondering what they'd think if they knew I was HIV positive. I remember going out to a club and feeling I had nothing in common with all the other young people there, which of course was rubbish. But you feel that 'HIV positive' is written across your forehead and that no one will be attracted to you again.

While most of my friends have been supportive, when one particular friend found out he thought it was his duty to warn everyone we knew about this vampire in their midst. But every time there was one loud, angry person against you, there were plenty of quiet people ready to stand up for you. And over time, the glass wall dissolved and I had a normal life again.

Picking on someone who is already vulnerable is bullying. HIV is simply a chronic health condition, whether you're six, 16 or 60. The sad thing is that many people don't feel they can tell anyone they have it. So while the human instinct is to support the vulnerable, how can that help be given if people feel they can't reveal they are HIV positive?

There are four hospitals at which people can access treatment here (Royal Victoria Hospital, Belfast, Causeway Hospital, Coleraine, Daisy Hill Hospital, Newry and Altnagelvin Area Hospital, Londonderry). There are two HIV support centres (Belfast and Coleraine) and if you have a cold or you're feeling ill, or worried about your drug regime, the centres offer people the space to talk to others in their situation, and somewhere they can tell jokes about the illness - it's very important to have a sense of humour. It's part of coping.

Treatment here is often much better than in many other parts of the world and I'm fortunate that I'm currently very healthy and don't require drugs. Of course, the future is uncertain, but can anyone out there say otherwise about themselves?

There are many misconceptions surrounding HIV. One is that the virus is automatically passed on to a child from a positive mother, and another is that affected women cannot have a planned pregnancy. I'm living proof that these are untrue. I became pregnant two years after my diagnosis. Hospitals had held a certain amount of fear for me but this time I was going for a good reason - something really positive was happening to me.

The biggest worry I lived with was, apart from my own health, passing HIV on to someone else. But I had done a lot of research and had excellent support and counselling from the medical staff. While I had a low level of the virus in my blood I took anti-retroviral drugs (HIV is a retrovirus) to bring it down to zero. This also meant that the virus would not cross the placenta into the foetus. The baby was born by Caesarean section to make the birth as short as possible - my son would have received the anti-retroviral drugs I took when I was pregnant, and he was also given a short course when he was born. He was screened at birth and three months afterwards, and was found to be negative.

I did encounter some animosity, but only from a very small minority of staff, a couple of nurses who thought they shouldn't have to care for me. Instead of wearing one pair of gloves as they did with other patients, they put on an extra pair when they approached me.

My son is a real joy to me. I haven't told him that I'm HIV positive and I have no fears about doing so. I only worry that he may have to care for me in his teenage years. I want him to grow up, travel the world, rebel and worry me greatly - I don't want to be a worry to him.

Happily, I'm also in a great relationship. It's certainly not easy to start a relationship with someone - when you are HIV positive you wonder if anyone will find you attractive again. But if you have a real and genuine relationship and you love somebody, he won't mind - and it is possible to find that. I think it's important to tell the person immediately that you are HIV positive - it's great first date conversation!

I don't know if there has been much of a change in people's attitudes in 10 years. Now, people aren't as ill and the support that's available is much better. Certainly there are people struggling every day, and out of the handful of people I know in Northern Ireland with HIV, three have died. But I've also lost two others to cancer. People may be scared that their son or daughter has become a different person - and to an extent they have - but they're still the same person with the same ambitions and drive.

Of course, it is still a sexually transmitted disease and is avoidable. Being careless once in your 20s can change your whole life. Eleven years on, there are moments when I wish things had been different. But HIV has been a fairly low level interruption in my life and, as to the future, I don't have any overwhelming fears."

- Health Protection Agency statistics report that at the end of 2005 an estimated 63,500 adults aged over 15 years were living with HIV in the UK, 20,100 (32%) of whom were unaware of their infection

- In Northern Ireland, there are an estimated 650 cases of HIV

- Calls to the HIV support centre helpline (0800 137 437) increased by 43% in the first six months of 2007. Kieran Harris, Chief Executive of The HIV Support Centre, said: "Sadly the rate of HIV infection continues to grow at an alarming rate with approximately two new diagnoses per week meaning that Northern Ireland now has the highest growth rate of HIV infection in the UK (per capita)."

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