Thirty years after HIV was first tested for in the UK, Andrew Youngson finds out what it means to live with the condition today
It is an increasingly well-known fact that being HIV positive is no longer a life-shortening condition – just a life altering one.
And a number of groups now exist to help those who are newly diagnosed understand how normal a life with HIV can be.
For support workers Colin McKay and Carina Strachan, the ability to help people find their voices and self confidence after they contract HIV is a privilege.
“It’s a humbling experience, to know that I’ve helped someone,” said Ms Strachan, who coordinated a support group at Terrence Higgins Trust Scotland’s Aberdeen branch.
Mr McKay, groups and support worker at the city’s Gay Men’s Health branch, added: “With this HIV group, we are enabling people to find their own voice and to say, ‘I deserve better than this’.”
In the final of a two day series, The Press and Journal hears from local people living with HIV about their experiences, and how they have found their voices in the face of social stigma.
“You have to own this, and not let it own you”
When asked to describe his level of knowledge of HIV before he contracted it 18 months ago, Sinclair paused for a second.
“Blissfully ignorant,” is the answer the 40-year-old settled on.
It’s not that he was “prejudiced” or “purposely ignorant”, he says, just “a little bit flippant”.
Since becoming HIV positive, Sinclair’s knowledge of what it means to live with the condition today has naturally been brought up to speed – from the medical advances, to the long lives people are now capable of leading – but this is not to say the civil servant didn’t struggle at first.
“I was shocked. It’s a process of bereavement. Sadness, loss, shame, embarrassment, stupidity – all of those things.
“But you come to terms with it very quickly,” he explained.
While he has been living with the condition for a relatively short time, he seems very well adjusted to it. What helped him reach this point?
“One consultant told me, ‘you have to own this, and not let it own you. Go away and read about this’. You realise it’s not the biggest issue. The real issue is the stigma. In terms of a health condition, it’s one of the most manageable there is.”
For him, that stigma that still exists in the UK can trace its roots three decades back to when HIV was first diagnosed in the country. Many people thought the advertising campaigns designed by the government worked by spreading fear – and that is still influencing attitudes today.
“There’s a legacy from the early campaigns,” said Sinclair.
“Don’t get me wrong, Britain is held up as a great place to have such strong awareness. And they say those campaigns did a lot to reduce the impact. Nonetheless, too little has been done to redress the balance.
“There’s no recognition of the progression of the health outcomes. And the perception of the general public relates to that.”
The best method for tackling the stigma, he believes, is for education to increase at all levels of society. HIV and AIDS aren’t what people think they are. A powerful tool in the battle against stigma is for people living with HIV to step into the spotlight and share their stories.
But given the enduring negative misconceptions about the condition and the people who live with it, adding a face and a name to HIV is stillan incredibly brave step to make.
“When I first agreed to this article, I felt an absolute obligation to put my name to it and not hide behind anonymity, otherwise I’m perpetuating the stigma and fear,” he said.
“But I have such a battle with myself about it. There are many practicalities of how much impact it will have, such as what about my work? It shouldn’t matter.”
“The more people that you are open about it with, the more acceptable it becomes”
When Michael was laid low a few weeks after a short break in Manchester in late 2011, he initially brushed it off as a stomach upset.
“I was being sick a lot. And I actually thought I had picked up food poisoning,” the 30-year-old explained.
“I had cold sweats and pins and needles down my arms. The sickness and diarrhea lasted 10 days.”
The Aberdeenshire-born man, who works in the retail industry, now knows this brief bout of ill health was a seroconversion illness (SCI) – a common first sign of infection which can occur in many people soon after exposure to HIV.
As scary as the symptoms were at the time, the diagnosis that he was HIV positive a few weeks later was far worse.
“It’s a complete blur. I got off the phone and started crying. I remember being in the shower bawling my eyes out. It was the worst day of my life,” he said.
As Michael’s immune system was low at the point of diagnosis he was put on medication immediately, and his viral load – the amount of HIV in a sample of a person’s blood – was negligible soon after.
It has stayed there since and he now feels in a much better place emotionally and mentally – perhaps even more comfortable within himself than he was pre-diagnosis. Being part of the HIV friendship network group at Gay Men’s Health in Aberdeen has offered Michael a safe forum to talk about living with HIV. And while he operates largely on a need-to-know basis, he considers himself to be far more open about his status.
“The more people I know that have got it, it makes me realise I’m not on my own,” he said.
His love life has been somewhat complicated since being diagnosed, but the fact he feels on top of his condition gives him hope for a long-term relationship in the future.
“I’m more comfortable about it now. I feel like I’m in control of it now,” he said.
“My hopes are the same as everyone else’s. I want to settle down, and find someone to make a life with.”
He finds opening up to people, whether a potential partner, or a new friend, helps to dispel any myths which still linger about what it means to live with HIV today.
“The more people that you are open about it with, the more acceptable it becomes,” he said.
“It’s still very much what it was in the 80s and 90s. People think you are just going to die.
“A couple of friends were like, ‘oh my God, I don’t want you to die’. And I said, ‘I’m not going to unless I get hit by a bus’. Because the likelihood is, this won’t be the cause of my death.”
In north Scotland, the following numbers of people are known to be living with HIV: Grampian (369); Highlands (134); Orkney/Shetland/West-ern Isles (15) (NB These do not reflect numbers of undiagnosed people. Stats from hivscotland.com)
Today, the life expectancy for someone living with HIV, who is on anti-retroviral treatment and responding to treatment, is no different to the general population, and in some cases higher due to intense medical attention
Findings from the PARTNER study have indicated that people who are on effective HIV treatment, with an undetectable viral load for least six months, cannot pass the virus on. The National AIDS Trust (NAT) is currently lobbying the NHS to allow people to start treatment early if they want to, in order to prevent transmission.