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Sunday, 7 July, 2002, 22:50 GMT 23:50 UK
Facing up to life with HIV
'John', a gay man in his 40s, was diagnosed HIV positive on 10 July last year, at St Mary's Hospital in Paddington, west London. At the time he wrote for News Online about how he was coping with this devastating news, and one year on he picks up the story.
My first few months of living with HIV were more a challenge to my state of mind rather than my physical health.
At times it seemed like an overwhelming presence. Every walk along the street, every tube journey, every minute at my desk, it was there in the back of my mind.
Surrounded by the love of many people, the pressure was easier to bear - but there is a sense of isolation as well.
You are also conscious that you are privileged to live in a part of the world where the treatment is both available and free - while many millions of others are not so lucky. For many of them this is a death sentence.
But each individual confronted with the news that they have this virus faces a unique crisis - and how you deal with that is probably the greatest challenge you will have ever had to face.
Risk of prejudice
However unfounded those emotions may be - dealing with a sense of blame and shame is one part of the unique character of life with HIV.
No other 'illness' in the world comes with such a risk of prejudice attached - though thankfully this is less now than ever before.
While I know many other people have faced enormous difficulties, on the health front I have been very lucky so far.
My immune system remains extremely strong - better than some people who have never had HIV. The amount of virus in my blood remains extremely low.
I tried combination therapy for just three months, with the care and support of a great team at St Mary's Hospital in west London. (Special thanks to Norbert, Mike and Zoe for all of that)
There was no adverse reaction to the drugs, and if my immune system weakens in later years there are encouraging signs that the therapy will help to counter that - and hopefully this will continue to keep me healthy. For the moment I do not need to take any more drugs.
So for now the virus only intrudes from time to time in my daily life.
The monthly visits to hospital for blood tests are a reminder that things will never quite be the same.
Living with someone who is free of the virus, carries a particular responsibility and for me, some deeply unsettling fears.
However careful you are - the anxiety lives on somewhere in your mind that in loving someone you just might accidentally pass on the virus, and it is a chilling thought.
But like many other people I refuse to let HIV run or ruin my life.
The love I have with my HIV negative partner is deep and rich and everything I could want.
I enjoy my job, and the people I work with, and from those among them who know, the quiet and often unspoken support has been of enormous help.
Turning back the clock
To those growing numbers of people in this country putting their health at risk through unsafe sex, I would plead with them to think again.
Many of us living with HIV have managed to get on with our lives - some with the help of drugs, others not - but it is not a state of mind that you wish others to share.
One year ago this month I was told that I was HIV positive, and the impact of that moment will be with me until the day I die.
I would give anything to turn back the clock but I cannot.
Despite that, I remain optimistic and happy - and for anyone who has recently received the same news as me - I would say hang in there, life can be good again.
Some of your comments on this story:
I was diagnosed in 1998. Being told was like being hit in the face with a shovel. Four years on however, I'm still healthy.
I support John's comments about individuals putting their own health at risk through unsafe sex. Growing up in the 1980's we were bombarded by public health messages about HIV, AIDS and safe sex. Why have things gone silent? This can only be stopped by every individual taking responsibility. No-one can be complacent.
At 28, I was told I had cancer. Now 54, I realise living one day at a time was right. As all people matter, it is vital the Church campaigns vigorously for further research [into HIV/Aids]. Healing is about the whole person, not about politics or preferences.
John you are very lucky dude as there are some great people in the UK working with HIV sufferers (Brighton Cares and Sussex Beacon two shining examples).
A relative was diagnosed with HIV when he was 18. He never accepted it and from that day onwards he lived a life of hell. Unable to accept help, unable to live with HIV, he eventually took his own life four years later
My husband and I were diagnosed 10 years ago. It was a total shock to both of us and has shaped our lives dramatically since that day.
The good news is that we are still here to tell the story and with plenty of plans for the future. My biggest sorrow is the pain it has brought to my family and the fact that we still feel we have to hide it. However, I thought we would be dead a year after our diagnosis but we have lived successfully up to now with HIV. I hope this gives those who have been recently diagnosed some hope for their future.
Unsafe sex is now part of the risk, the thrill of sex, of many gay men, and it is a method of demonstrating trust for many others. It is also integrally linked into the low self-esteem of many gay men. Only when those issues are addressed will any campaign begin to have an impact.
John, we seem to share many similarities. I too was diagnosed about a year ago and after the initial whirlwind, I find myself settling into a new me. I share the feeling that I wish I could turn back the clock. But the future is bright for all of us and I truly believe science will prevail. This does not take away the occasional feelings of failure and isolation. For all of you who share the same fear, remember and believe we all have a future. Keep the mind sound and the rest will follow. x
My partner of a dozen years was recently diagnosed with HIV. It has been very hard watching him suffer from guilt and fear. The words of encouragement in the article help us both greatly.
I was diagnosed in 1990, but should probably trace infection back to 1983. It is clear however that often you have to combat the myth that HIV/AIDS is a "death sentence" when clearly it is not always so. I have had friends who have succumbed, but many others who have not. The future is not necessarily rosy but nor is it bleak.
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