Thursday July 4th was the anniversary of Terry Higgins’ death, one of the very first people to die of an AIDS-related illness back in 1982.
The Terrence Higgins Trust was set up by his partner and friends in Terry’s name, to humanise the epidemic and provide life-saving information about this new and deadly virus.
So it was fitting that last week both my friend Ian Green and I came out publicly with our HIV diagnosis stories. We’ve both lived almost all of our adult lives as HIV+ gay men. Between us we have over 50 years of “living with HIV” experience.
I had told my mum about my HIV status on a Tuesday back in May and I wrote the essay in one pretty continuous stream over the next 24 hours. It was probably the easiest piece of writing I’d ever produced, after all the story had been rolling round in my head of over two decades.
The story we shared in Attitude was a shortened 800 word version of the original article. I worked with the THT to weave in some of their Can’t Pass It On Campaign messaging. It’s an important campaign that educates people of the fact that HIV+ people on effective treatment CANNOT pass on the virus. If everyone knew this, we could bring an end to stigma around HIV. Not only that, but we could stop HIV transmissions altogether
I was pleased that we were able to give the story a practical and useful purpose. It got over 1,000 likes on Facebook and was shared and commented on over 200 times.
Since then I’ve had lots of very kind personal messages from friends, colleagues, ex colleagues and business contacts from over the years. Many people said they found the article educational – which is great. Several people have also asked to see the original, unedited story – the writers cut!
So here, it is, for the first time. It’s 2500 words so is about a 20 minute read. :
“Ending 26 years of shame” – The original, unedited version
The fastest HIV test in London was at the Royal Free Hospital, Hampstead. You had your blood taken in the morning and results arrived that day at 4pm.
I sat in the waiting room with twenty other nervous people. One by one, names were called and people shuffled terrified into a side room before emerging a minute later looking relieved.
Name after name was called and the room was emptying quickly. I waited nervously for mine feeling increasingly sick as the minutes passed.
With two of us left in the room the next stranger’s name was called and my heart sank even further. Being left until last didn’t seem so good.
I’d been told in the morning that if my results was negative I would meet a nurse but if they were positive, I would meet a nurse and a consultant.
As I walked into the room, the edges of my vision blurring with fear, I saw the consultant, Professor Margaret Johnson sitting by the desk.
I couldn’t help myself, “Oh, the angel of death is in the room”, I said. It wasn’t a nice thing to say and I’ve always regretted it.
“I’m sorry I don’t have the news you wanted”, she said. “I’m afraid your test has come back as HIV antibody positive. You have the HIV virus.”
She was kind, caring and gentle. I was devastated.
It was 1992 and I was twenty years old.
I’d been in London less than a year and effective, long term treatment for HIV was a further five years away. An HIV diagnosis in 1992 was terminal.
I remember everything vividly up to that point but I have no idea what happened next. I know I asked for a cup of tea with two sugars, even though I always drank my tea without.
I remember meeting my best friend and flatmate Paul in the pub at Hampstead where he was waiting for me.
“I’m really sorry love, I’m HIV positive”.
The feeling of shame, guilt and personal blame were ingrained in me from the start. Here I was apologising to my friend for the grief my terminal diagnosis would cause him.
That weekend we went clubbing, got drunk, took ecstasy, speed, all the usual drugs. We partied, laughed and danced. But things were different. I was a marked man with a heavy and permanent cloud never far from my mind. If ever I forgot what had happened it was only for a few seconds.
Getting any serious medical diagnosis is traumatic. Being told you have HIV with the shame and stigma that disease carries is unbearable.
When I came out as gay to my family just two years earlier my father said “Watch out son, you’ll get AIDS”. I was filled with shame, regret and remorse that he had been right.
I’d grown up in Britain in the 1980’s where AIDS terror and a resulting homophobic backlash had thrived. The Sun newspaper ran headlines like “US GAY BLOOD PLAGUE KILLS THREE IN BRITAIN”. They published editorial from American psychologist Paul Cameron who said “All homosexuals should be exterminated to stop the spread of AIDS”.
Every day they showed gay men as a sinful threat to society. The Sun newspaper said
“… gays are expected to retaliate by spreading the virus to the rest of the community through revenge sex with bisexuals.”
They called gay people “nasty-minded perverts”.
Two Conservative party MP’s said that homosexuals should be either exterminated or sent to an island on public health grounds. Even Manchester’s Police Chief Constable, James Anderton, weighed in with a speech condemning “perverted homosexuals for spreading AIDS”.
This was my childhood, my formative teenage years. You don’t have to look too far to see where the shame and stigma comes from.
With no effective treatments on offer, HIV organisations encouraged us to learn whatever we could. “Knowledge is power” was the mantra. Positive gay men became unusually knowledgeable in normally rare infections.
Untreated HIV is terribly cruel. It doesn’t kill you, it just reduces your immune system to dust. Your body then becomes overrun with infections that healthy people fight off without notice, every single day.
By my mid twenties I was a home expert in diseases like Kaposi’s Sarcoma (disfiguring skin cancers), Cytomegalovirus (blindness), Cryptosporidiosis (persistent diarrhea), Toxoplasmosis (brain abscess) or Candida of the oesophagus (mouthful of cotton wool and an inability to eat). There are hundreds of opportunistic infections that can and will take hold of you when you have no immune system.
From 1994 to 1996, the journalist Oscar Moore chronicled his own experience in a regular Guardian newspaper column titled “PWA – Person With AIDS“. Each week was his honest, tragic and occasionally funny trip around doctors to discuss what had failed, fallen off or become toxically infected that week.
I read his column compulsively, clipping each week into a scrap book that I still have now. He was my hero, the only person I knew that was going through what I was about to go through. His articles were like watching a car crash in slow motion. A car crash that I knew I was going to star in next. He died in 1996 aged 34.
But five years after my diagnosis something changed. Trials started to show that combination therapy – taking three anti HIV drugs at the same time, could suppress the virus levels in the body to an “undetectable level”.
This was the game changer in HIV treatment.
On the day of my diagnosis it didn’t exist. All we had was AZT, an abandoned cancer drug that was given in high doses causing awful side effects. It would work for a few months before your virus mutated and rendered it useless.
Whilst combination therapy eventually became a revolution, the medical profession was initially cautious. No-one knew how long treatment would work for.
Until I was well over 30, the advice was that combination therapy would delay the onset of AIDS defining illnesses but would not prevent it. All we could hope for was it would buy enough time for science to find a better answer.
Soon after testing I moved my care to the Bloomsbury Clinic on London’s Tottenham Court Road and they’ve looked after me there ever since. Two tests used are used : CD4 count – a measure of how much immune system you had left and Viral Load, a measure of how much virus you had active in your blood.
I’ve seen the same doctor there, Jonathan Cartledge, for over twenty-five years, charting his own progress from a young junior doctor to a consultant physician and award winning HIV teacher.
He once missed an appointment with me and a locum stand-in doctor illustrated the CD4 to Viral Load relationship by drawing me a train track.
“CD4 was”, he explained, “the amount of track you have left whilst viral load was how fast you were travelling down the track”.
He drew a diagram with enthusiasm and used his pen to illustrate me moving down this one way train track with an abrupt ending. Whilst the analogy was clear, seeing my life end across three inches of a notebook did little too improve my mental outlook and I resolved to cancel the next appointment that Jonathan couldn’t make.
I got through each day as best I could. But looking back I can describe my twenties as undeniably tough.
The shame of getting HIV so young was omnipresent and deeply oppressive. I told a few close friends who sympathised with me but could neither do nor say much. All we could do was carry on as usual, party like normal and pretend nothing had changed. I had no other friends with HIV and I felt desperately alone.
I was far too ashamed and frightened to tell my parents and family. My mum was already struggling with my father’s advancing mental illness and telling her that her twenty year old son was going to die of AIDS in the next ten years seemed unbearably cruel. I just couldn’t do it.
What hurt me perhaps the most was that I couldn’t cry on my mother’s shoulder. All I wanted to do was collapse in her arms and have her hold me and tell me that she loved me. I thought long and often about this but never escaped the crushing weight of shame and the absolute terror of seeing what it would do to my parents when they found out.
But life did go on and I graduated from university and got a job on the graduate programme at BT. I worked hard while I was there and covered up my three monthly appointments to the HIV clinic for blood taking and tests.
Quarterly blood tests were as traumatic as the original diagnosis
In those days your quarterly bloods took 10 days to process and those ten days were interminable. How much would your disease have progressed? What state would your immune system be in? How fast was your train running to the end of the track?
Every three months it was like getting diagnosed again. Stomach churning feelings of dread and despair. My entire life would hang on whether my CD4 count was up or down 50 points or more.
Clinic check-ups would correlate with regular panic attacks at my office desk. As I felt the blood rush to my head I would run and hide in a toilet cubicle to calm down. Occasionally I had to go home, so full of fear and panic I was just unable to function at work.
I turned down an exciting placement to Germany because I was too frightened to be away from my HIV clinic. My boss thought I was odd in opting out of the generous company pension scheme. But what use would a pension be to a boy who was unlikely to be alive at 30?
Over time I met other people with HIV. An ex-boyfriend, “Belfast Paul” told me he was positive and it was clear he was in a more advanced stage than me and was struggling mentally.
I remember talking to him one night about my desire to buy a house and get a mortgage. He looked at me like I was mad.
“Glenn, people like us can’t get mortgages and what good will a house be to you when we’re dead?”
I never saw him again after that night and I have often wondered if he survived. Twenty six years ago there was no Facebook to keep us connected.
In 1992 my HIV diagnosis was terminal. The Jubilee line underground extension was being built and was scheduled to open in 1999. I remember looking at the posters knowing there was little chance I would ever get on it.
But combination therapy became a much bigger success than anyone dreamed. Treatments, taken properly, worked and viral load remained undetectable.
Worries the the virus would mutate and treatment would fail didn’t happen for most people. Science progressed rapidly with newer, more convenient treatments with fewer side effects being approved each year.
For those who did have treatment failure, there was a greater list of new types and classes of drugs to move to. Most of us with access to good health care were going to be OK. I was probably 35 by the time this knowledge finally sunk in. I’d spent a decade and a half believing I was going to die.
I’m one of a unique set of people to have been given a terminal diagnosis only have it rescinded. By 2013, when I was 40, medical trials showed that people with HIV could lead lives of almost normal lengths.
I went on to buy that first house. I started my own business, then another and eventually went on to build a successful tech company that employed over 400 people and eventually sold to American investors. I went on to find happiness in relationships and ultimately a wonderful husband who I married and I’ve been with for the last thirteen years.
By 2014 the Partner 1 clinical trial found that people on effective treatment could not pass on the virus to anyone else even when not using a condom.
This was ratified by Partner 2 in 2018 and my several other studies repeated worldwide.
The impossible had happened – we discovered that Undetectable viral load meant Untransmissable HIV infection. Something we now call “U=U”. Many people still don’t know – education hasn’t yet caught up with the science.
Not only was I alive and likely to stay alive to enjoy all the up and downs of a normal life, I could even have a normal sex life with my husband and partner. Having to use a condom with your husband of nine years is a constant reminder that something is wrong and getting rid of that was incredible. Knowing you are not an infectious danger to others is a luxury I had never dared dream of.
Whilst medical advances have revolutionised HIV treatment we have much to do on the shame and stigma of HIV.
From my mid thirties onwards I was largely free of the crushing fear of that impending horrible, early death. But I still carried round with me the shame and stigma of a disease that only a small number of people knew I had. It’s strange knowing you are healthy and happy but still splitting yourself and carrying a story around with you that you’re too frightened to share.
As my career developed I became a writer and always wrote from the heart, transparently and openly about my personal views and experience on a range of topics. But my HIV experience was a huge area that I felt powerless to write about.
I’ve wanted to write about my experience for many years in the hope that it might help someone else struggling and, frankly, because I thought it might be cathartic. But this was impossible, because after 26 years I had still not told my family.
That changed this week when following six months of therapy I took the risk. My mum was visiting me in London, the mood seemed right and I thought “It’s now or never”.
“Mum”, I said, “there’s something I want to tell you. It’s kind of big but it’s very much in the past, it’s 26 years ago and I’m fine, there’s nothing to worry about.”
She sat upright and tried to not look worried but clearly she was desperate to know what I would say next.
“Mum, I’ve had HIV for 26 years”.
I’d thought about this moment for over two decades and had replayed scene after scene in my head of what would happen. All of them were disastrous. I worried she wouldn’t understand, wouldn’t believe me when I said my medication was fine, would be crushed herself by the shame and stigma. I thought she might pass out, be sick, burst into tears or do all three.
I was so wrong.
She put her arms around be and pulled me to her chest and told me that she loved me. I cried for nearly half an hour.
She told me she was so sorry I’d had to carry the burden myself and I could have told her anytime. She would always have been there for me.
Later that night she told me how proud she was of the life I had built for myself whilst living under a cloud.
Crying into her arms that afternoon was all I had wanted to do in my twenties. It would have made the unbearable, more bearable. And here it was. Over two decades late, but no less important and no less healing.
I regret staying silent on HIV for so long, if I’d had more courage maybe I could have helped someone else avoid the shame and anxiety that I had. Most of all though, maybe, I regret underestimating my mum.
What I don’t regret though is the path my life has taken. If I could turn the clock back I wouldn’t change anything.
Everything that happened made me who I am today, and I like who I am. I have a wonderful husband and partner and I am surrounded by friends I love and who love me. If my twenties had been different, if I hadn’t caught HIV when I did then then I wouldn’t be who I am now and I wouldn’t be here right where I am now.
If you’ve not been tested get tested. The world has changed and treatment is now almost a cure. Get tested and treated and you’re no longer infectious. HIV can stop with you. If you’re negative then stay negative by using PreP.
And whatever your status please join the many people trying to remove the shame and stigma around HIV that impacts lives in such a powerful way.
Glenn Elliott is a writer and journalist who lives between London and Berlin.