OPINION: On World AIDS Day, the story of AIDS offers us an incredible legacy

by Paul Coleman | National HIV Story Trust
Tuesday, 1 December 2020 08:38 GMT

A student poses as she displays her face and hands painted with messages during an HIV/AIDS awareness campaign on the eve of World AIDS Day in Chandigarh, India, November 30, 2018. REUTERS/Ajay Verma

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* Any views expressed in this opinion piece are those of the author and not of Thomson Reuters Foundation.

As the world marks World AIDS Day on December 1, it is important to remember that everyone's has their own experience of the virus

Paul Coleman is a co-founder of the National HIV Story Trust

“The day you are diagnosed HIV-positive everything changes. Nothing is the same again” says Adrienne, a heterosexual woman in her 60s and a so-called “long-term survivor”. She wears an expression even now of surprised incredulity.

One thing I learnt from interviewing more than 100 people, touched by the 1980s/90s AIDS pandemic, for every apparent truism you always uncover a reverse, for every negative you find a positive and for any generalisation there was always an exception.

The fact is there is no one true story of what the pandemic represented. There is no definitive story of AIDS.

In our recent history more than 20,000 people died of AIDS in the UK, globally almost 33 million*, and there were many more millions of lovers, friends, relatives and carers whose lives would be deeply affected by being part of that story. The memories and experiences are a rich, difficult, heart-wrenching and uplifting resource and moving testimonial.

The many stories of AIDS offer us an incredible legacy that should be protected and remembered forever.

Yet among this amazing set of people who have shared their testimony with me, with us, and with the world, are a group who sit at the heart of the story, these are the survivors. Mainly, they are HIV-positive gay men, but not exclusively.

What does it mean to be a survivor? I could tell you stories of people who battled desperately for their own survival – against the odds – or those who encountered destructive and negative reactions to their status, those who suffer acute and complex PTSD, those who are damaged by experimental drug regimes of the 1980s and ‘90s, or those who lost their loved ones, their jobs, their homes, their hopes.

The only commonality being that they are still alive.

Equally, there are people whose lives were enriched by their HIV diagnosis, who created ground-breaking technologies and infrastructure for the care of people with AIDS. I could tell you of those liberated by their status, who studied, built new careers, were spiritually transformed or travelled the world seeking every new experience.

Those who turned their own plight into the love for others.

You will often hear it quoted that people who are living with HIV, if properly medicated, can now lead a “normal” healthy life and no longer transmit the virus - and to a greater extent this is true.

Is the apparent “normality” of being HIV-positive the commonality of being a survivor? No.

The truth is, the moment you are diagnosed positive, you become a survivor and this differentiates you from those simply living. Something in the moment of diagnosis changes things – a sort of shift of perspective.

Perhaps it is your understanding of mortality (this was certainly the case in the 1980s and ‘90s). The tunnel vision, the room swaying, the body’s internal compass kicked from true north and forever remaining akilter.

It’s not that the world stops making sense, it’s that it becomes a step removed. A veil descends – you’re still in the world of the living but you’re on a fast track, travelling alongside everyone else but separated nonetheless. Living changes to surviving.

Your life, as it unfolds, may differ from others with HIV: it may be positive or negative, have highs and lows, tears or laughter or both – it will certainly have the potential to be just as rich a tapestry of experience as other people who are not HIV-positive. But like it or not, you will be a survivor.

Back in the 1980s and ‘90s, if you lived more than 12 months, you were the definition of “long-term survivor”, now it relates to those who are still here after 40 years.

As those of us lucky enough to have lived now grow older, that intangible veil can still create an ‘otherness’ to how one experiences life. But we have lived. And we are alive.

*Figures for UK and global deaths corrected