Why I'm living life to the full 27 years after HIV diagnosis

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Tuesday, March 08, 2011
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This is Nottingham

AIDS had just begun to cast its shadow over the world when Matt Gregory was diagnosed as HIV positive.

He was 14.

It was the 1980s, the era when the spine-chilling tombstone adverts screamed: Don't die of ignorance.

Relatively little was known about Aids at this time other than it was a deadly disease with no known cure which could be passed on through sex.

Matt, who was born with the inherited bleeding disorder haemophilia, became infected with HIV through contaminated blood injected to help with clotting.

He was told that he would be dead by the time he was 20, but because he was healthy, Matt tried to ignore it.

Three decades on, Matt, who is now 42, is finally able to speak openly and honestly about the impact of the virus on his life.

Recalling the diagnosis, he says: "It didn't really register with me. I didn't fully understand how dangerous or deadly it could be."

There was no one to turn to for advice or counselling in those days.

"Nottingham now has a number of really good support services who can help HIV positive people through any point of their lives but there was nothing then."

It hit his parents the hardest.

"My parents had injected me at home so in their eyes they had injected this virus into me and effectively killed me so it was a difficult time for everybody."

Matt carried the secret for years, not even telling his closest friend until he was 19 – and even then he got someone else to tell him.

Ignorance and taboos surrounding Aids and HIV meant he kept it to himself.

"For the first few years trusting people with the information was very difficult because it could be dangerous information. It was the days when people had Aids scum sprayed on the front of their houses.

"I was very bad at talking to people. It was only about five years ago in my mid 30s that I became able to talk about it and that has been the most liberating experience I can imagine," he says.

It enabled Matt to ask his mother how she and his father had coped over the years.

"She said: 'We coped because you coped' and I can say the same to them. We don't talk about things a huge amount. There's no drama or flouncing around. Things happen and we deal with them."

Matt was one of 1,200 haemophiliacs infected – today only 350 are still alive.

"A lot died in the early years. It wasn't just HIV that killed them. Some took their own lives and some just gave up. For anyone living with HIV you need to want to carry on and have that strength to get up every day and get on with things. It can be difficult – people cope differently.

"I spent a lot of time ignoring it in my conscious mind but it's always there in the background," explains Matt.

He regards himself lucky that all his friends have stuck by him and he has never had a bad reaction.

Yet he knows people who have been rejected, abused and vilified because of the stigma attached to Aids. "It is a condition people used to be terrified of and some still are.

"There was a time people wouldn't shake your hand, afraid of the physical contact, and I was worried about shaking hands - what if they found out I am HIV positive?

"I hate it when people ask me how I got it and when I talk to people, because I got it through a blood product, I am seen as a victim because I got it through no fault of my own.

"Other people have got the extra stigma, because they made choices they got HIV, which is just incredibly unfair. To stigmatise and chastise someone for how they got an infection is appalling.

"Because people get it through sex it has an extra stigma – I don't know why that is...perhaps it's 'you're ruining sex for the rest of us'.

"I find that quite upsetting. No one in this situation deserves to be stigmatised, no matter how they got it."

The biggest impact of being HIV positive has been on Matt's attitude towards sex.

Although he's currently single, he's had several girlfriends.

Wondering why the relationships have broken down he ponders: "I don't know if it's the HIV or because I'm an awful partner."

To his shame he never told the first girl he slept with at 16 that he was HIV positive, although he was sensible enough to use a condom.

"I was aware of the risks but young people are stupid and when I look back at my life there are so many things I regret and that is one of them.

"I had a difficulty saying the words HIV and Aids," admits Matt.

He did confess a few years ago and the woman was remarkably accepting.

Nowadays, Matt is honest from the off, saving him the dilemma of when in a relationship do you drop the bombshell?

"Do you walk up to someone and say: 'Hi I'm Matt, I'm HIV positive. Do you want a drink? Or do you wait until you have been seeing them for a while and then tell them.

"It's like a hand grenade and the longer you wait, the bigger the explosion.

"Personally I do it right at the beginning. If I was attracted to someone I would tell them within five minutes of meeting them."

But the more Matt falls for someone, the harder it hits him.

"As you get to know and love someone, the more you want to care for them and protect them, and so every time you have sex with someone, no matter how cautious you are, there is always that risk. No matter how small it is, that colours a relationship for me. The last thing you want to do – and I know it is remote – is to kill the person you love."

After being told he wouldn't live beyond 20, Matt, understandably, never looked to the future.

He sat his O-levels but dropped out of sixth form with no career plan.

"To me it didn't really matter. I wanted to go out and have a good time.

"I discovered pubs and clubs and I went out with friends and enjoyed myself.

I never looked in the future and thought 'I want that'.

"It was a case of have as much fun as you can and as fast as you can," he says.

He worked as a barman until discovering an aptitude for graphic design but the job proved too stressful so he quit.

After two years as a volunteer, he is now a paid employee at the HIV and sexual health charity, Terrence Higgins Trust in Nottingham.

He knows first hand the difference having someone to talk to can make.

"When I was offered some support from someone with HIV, I sat down and talked to them and thought 'Wow. This is so good. I can be open and honest with this person.' It was a bit of an epiphany.

"Talking about it was a huge release."

One of his roles as a health and treatment worker is to support people living with HIV, however they became infected.

He says: "If people are diagnosed now they can lead a normal healthy life, in general. In the 80s, it was a death sentence.

"I feel if I am able to sit and talk to someone else with vaguely similar experiences it can be very supportive."

Matt says he loves his life but has regrets about what might have been.

"It has left me with a lot of thoughts about what I could have done. I wish I'd listened more at school – I love learning new things now.

"I never planned to have a family or get married. It was not something I saw as my future. I still can't look into the future. I am very much fixed in that mind set now. I accept that is me."

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6 Comments

  • Profile image for hollysmith

    by hollysmith

    Thursday, August 04 2011, 12:22AM

    “Aids , HIV, your an inspiration to all people well done to you,. Dont let the world tell you what to do?
    80s was the time for aids/hiv. Times have changed, there are drugs and understanding!
    Most of the UK employers are aware of "HIV" aware and understanding! DDA, Equality law 2010, etc (push the NHS)

    "Bully for you", "I pitty the fool"

    B A”

  • Profile image for This is Nottingham

    by S, Notts

    Tuesday, March 08 2011, 1:54PM

    “I suppose Mullet you would be the one spraying Aids scum on peoples houses.”

  • Profile image for This is Nottingham

    by Jimmy, Nottingham

    Tuesday, March 08 2011, 1:46PM

    “Mullet, Clifton
    its a criminal offence to have unprotected sex with someone without telling them they have AIDS/HIV, but people that live with it dont have to tell people they know or work with, its up to them as and when they tell people. You cant catch it by being near someone or even sharing the same utensils, so unless you have unprotected sex with someone that has it, dont worry”

  • Profile image for This is Nottingham

    by Reilly, Nottingham

    Tuesday, March 08 2011, 1:46PM

    “With a name like "Mullet" I am not surprised your attitude is so out dated.

    Why would you need to know that someone you worked with or knew had AIDs / HIV? Unless you are at risk of coming into contact with an infected persons blood or other bodily fluids then you are not at risk and frankly it is none of your business.

    To infect a person with AIDs knowingly is rightly so a legal issue.

    Grow up and get a hair cut Mullet.”

  • Profile image for This is Nottingham

    by Jimmy, Nottingham

    Tuesday, March 08 2011, 11:38AM

    “A touching story and an inspiration to people living with HIV. And a good point raised by Ted, alot of young people dont think about HIV and alot of people think that it will never happen to them. There is still alot of ignorance towards AIDS, but hopefully with stories like this, it could help other people and raise awareness.”

  • Profile image for This is Nottingham

    by Ted, Notts

    Tuesday, March 08 2011, 10:52AM

    “A moving story but there is still a lot of ignorance about AIDs. Apparently, a lot of young people believe there is a cure for AIDs and so view unprotected sex with less alarm that they should. There are also certain regions of the world where AIDs has reached epidemic proportions. It seems that it is (or at least was) acceptable to warn people of the dangers of sexual contact with certain groups e.g. prostitutes and drug addicts but that it is (was) racist to suggest there are certain national groups where infection is rife. Such ignorance endangers the youth of this country.”

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