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2 February 2021

I developed Aids 25 years ago. Today, my physical health is excellent – but the mental trauma remains

In 1994 I was hospitalised with tuberculosis, an Aids-defining illness. As several patients died around me, it seemed like only a matter of time before I followed them.

By Michael Carter

It’s a Sin, the Channel 4 drama about the London gay scene in the early days of the Aids pandemic, is receiving ­stellar reviews – by all accounts well-deserved. But I can’t bear to watch it.

It has been 30 years since I was diagnosed with HIV – the same amount of time that It’s a Sin’s star, Olly Alexander, has been alive – and 25 years since I developed Aids. Today, it’s still far too painful for me to watch a ­fictional retelling of the history of the virus, no matter how excellent.

A recent intersection of the HIV and Covid pandemics brought home how ­traumatic my experiences were, and how vivid the memories remain. Late last year, I joined a Covid vaccine HIV sub-study at St Mary’s Hospital, London. After receiving the second vaccine dose, my walk home took me past Selfridges. The store’s Christmas finery triggered a sequence of recollections that culminated in the explosion of a HIV memory bomb. I remembered the pre-Christmas shopping nights held there in the 1990s in benefit of the HIV charity Terrence Higgins Trust, and, then, my time working for the charity. I recalled the face of a colleague who had died of Aids at a tragically young age, an image rapidly followed by remembrance of other men – none aged older than 30 – who succumbed to this terrible disease.

The rush of memories made me stop, raise my hands to my face and cry out. Such a ­reaction is far from a one-off event. I ­regularly experience similar PTSD-like flashbacks. With a quickening heart rate and tightening chest, I’m back there.

I was diagnosed with HIV in May 1991. I’d arrived in London three years earlier, a bright-eyed and rather naive 21-year-old gay man. I rapidly learned that the theory of safer sex didn’t always survive an encounter with the sweaty, passionate reality itself.

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In 1991 a HIV diagnosis wasn’t good news. It was clear by then that being infected with HIV almost invariably led to illness and death, usually within ten years. AZT – the only anti-HIV drug then available – prevented the inevitable by months at best. In the summer of 1994 I was hospitalised with tuberculosis, an Aids-defining illness. Several patients died during my two-week stay on a specialist HIV ward. All of them were young gay men, similar to me in a multitude of ways: we had our age, haircuts, appearance, life-stories, taste in music and even friends in common. A nurse told me I woke up most nights screaming and crying. It seemed like only a matter of time before I followed them.

I was spared that fate. Just in time, powerful, multi-drug HIV treatment became available. I started my first combination in the spring of 1998. The amount of HIV in my blood rapidly plummeted to undetectable levels and has stayed there ever since, allowing my immune system to recover. My experience was far from unusual – the term “Lazarus syndrome” was coined to describe people given this second lease of life. Life-saving though they may have been, however, these early drugs were brutal. One killed the nerves in my feet and lower legs, causing constant pain and a loss of sensation.

Medical improvements, however, did ­follow ­rapidly. My current treatment is side effect-free and my consultant said my immune system is now so strong that he would never guess I had HIV. The regular monitoring I receive means that my life expectancy is, in fact, better than normal because any ­emergent problems can be spotted early. Presently, my only physical health concern, similar to many men in their early fifties, is elevated cholesterol.

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Nevertheless, those HIV bombs are still planted in my memory, ready to detonate without warning. Despite years of therapy, I still don’t understand what triggers them. I’m not alone in having these experiences: deep-seated psychological trauma is common among my HIV generation.

I’ve endeavoured to use my experiences for the benefit of others. Throughout the 2000s I wrote patient information leaflets and news reports for aidsmap.com, and the British Medical Association gave me awards for my work. I came to realise, however, that writing about the disease on a daily basis was ­eroding my soul and depleting my ­resilience; it was a relentless reminder of HIV and its attendant suffering.

I turned to scholarship, leaving my well-paid job to begin a doctorate on monastic art and architecture at the Courtauld Institute of Art. Studying abbeys such as Fountains and Rievaulx – those great monuments to the human spirit – provided not only intellectual stimulation but also spiritual solace and healing. It paid off in other ways, too. Since 2015 I’ve been the monastic historian at English Heritage, where I have the privilege of researching important abbeys and priories, and shaping their interpretation for the public.

For the most part, my medical care has been excellent. But etched into my memory is the sneering incredulity of the psychotherapist when I compared my HIV infection to an unwanted pregnancy, both the unintended consequences of sex. So, too, is the surgeon who covered my medical notes with biohazard stickers. I’ve been verbally abused in the street for who and what I am, harassed into moving house by bigoted neighbours and then accused of possessing “white male privilege” (by a white, middle-class, millennial academic). But most hurtful of all was the behaviour of some gay men, all too ready to “other” those with HIV, their language and behaviour as hateful as any Daily Mail columnist’s. If HIV activism showed me anything, it’s that progress is made through community solidarity and creating a common cause.

I know I have much to be thankful for; a ­loving relationship of 29 years standing with my partner Steve, excellent physical health and the type of job I’ve wanted since childhood. As a professional ­historian, I research and write history. I’m also aware that for the past three decades I’ve been ­living it, too. 

Michael Carter has recently contributed to a history of the UK HIV epidemic: “HIV in the UK: Voices from the Epidemic”, published by Routledge in January