One virus, four lives: The reality of being HIV positive

We agree to meet outside Pret A Manger on Southampton Row, central London. Waiting in the distance, through the grimy sunlight and the clatter of lawyers, City workers and literary types – all macchiatos and adrenaline – stands a frail-looking figure, bent over and clutching a walking stick. As I approach he smiles. His name is Hugh, he is HIV positive and he is 35 years old.

Yet there are more than double the number of new infections in the UK today than there were 20 years ago – and, for the first time, more than 100,000 people living with HIV. Among the statistics are stories far more complex than suggested. These lives, unnoticed, find the virus seeping into wide and unexpected territories: the psychological, social, financial and, as if in direct contradiction of the headlines, the medical.

I guide Hugh to the coffee shop next door. He approaches the steps gingerly, clutching the handrail. Sipping on a latte, he tells me that he contracted HIV in the autumn of 2009 and was diagnosed in March 2010 – a window so small as to provide almost textbook conditions for how soon to begin treating the virus.

His doctors arranged for a Macmillan counsellor to come and visit him, and, after several sessions, she transformed his treatment.

High up in a block of bright, modern flats in Hove, Sussex, lives 67-year-old Ian. He opens the door, invites me in and shuffles back into the living room, before plonking himself down. An extreme loss of body fat has left him wizened and gaunt, with hollowed, empty cheeks. This is just one, visible, problem of many. Ian was among the very first people to be diagnosed with HIV, in early 1984.

Premature death may no longer be beckoning for the vast majority, but in 2012 – the most recent year with available data – 490 HIV-positive people died in the UK, two-thirds of whom had been diagnosed late with HIV. And in one group – UK black Africans – more than 60 per cent of people were diagnosed late, compared to a rate of 40 per cent among white British people.;

Maluba lives in Bristol with her four-year-old son. She is unemployed, a "luke-warm Christian", speaks loudly and laughs a lot. She was raised in Zambia, but after living in Britain on and off since 1991, she finally settled here in 2006 – 11 years after diagnosis. She contracted HIV in Britain, but was diagnosed in her country of birth. This was a godsend.

Sat across from me in a coffee bar in Soho, London, is a 24-year-old with a baby face and little wire-framed glasses. As his story unravels, it becomes clear, however, that the innocence implied by Mike's appearance was eroded long ago.

Lisa Power MBE was formerly Head of Policy at the Terrence Higgins Trust, Europe's largest HIV and sexual health charity, where she worked for 17 years. She thinks that the issue of stigmatisation is "in some ways going backwards because the public know less about HIV than they did. People say, 'What can we do about HIV? Do we need more condoms or a big campaign?' We need decent sex and relationship education in schools." This, she believes, would also help reduce the homophobia that can trigger destructive patterns.

"No one in the LGBT community wants to admit that HIV is only part of a pattern of self-abuse and self-neglect within the community in terms of just not caring about ourselves enough."

Chris Sandford knows how common it is for HIV-positive people to fear stigmatisation and rejection. He shows me research undertaken at his clinic. The top three concerns surrounding HIV status were social isolation, fears about disclosure and fears of discrimination, which were reported by between a quarter and a third of people asked. Concerns about medication and physical health were reported by fewer people (21.8 per cent and 14.3 per cent respectively).

Today, HIV in the UK remains not merely a disease of the immune system, mostly controlled but sometimes complicated by medication, but of society – a disease exacerbated by a paucity of education. A recent survey found that a third of 12- to 17-year-olds do not know that HIV is transmitted through unsafe sex.

In this climate of misinformation, half-truths and ignorance, is it surprising that HIV-positive people are fighting on three fronts: the physical, social and psychological? And that they – with the media glossing over the horrors of the 1980s – face the full negative force of stigmatisation? The real gains from the development of treatment have never been properly relayed. (How many people know, for example, that people with HIV who are effectively treated are essentially uninfectious?) The true complexities of a life with HIV have never been fully explained.

When we look again at Hugh, 35 years old and walking with a stick, Ian, living with ghosts while seeing one in the mirror, Maluba, masking her identity to protect her child, Mike, grappling with schizophrenia, or any of the faceless, unknown HIV-positive people, many unable to be open about their illness, it is clear that something has gone wrong in the UK, where HIV-positive people are shamed and ignored, and HIV-negative people uninformed.

Assumptions abound. Infections rise. Asking an HIV-positive person today how they became infected so often elicits the following answer: "We didn't use a condom because I just assumed they were negative." People are still dying of ignorance.

And so we are left with two questions. The first is for doctors, charities and the government: Given that the supposedly miraculous treatments are neither enough nor reaching those in need quickly enough, what more must be done? The second is for us all: Would you rather have HIV than diabetes?

Some names have been changed.

Ian Gurnhill died at the Sussex Beacon, a care facility for people with HIV, in August 2014.

This article was originally published on Mosaic. Read the original article.