As we continue to get to grips with the ongoing pandemic we’re currently living through, just four decades ago, another pandemic swept the world – and devastated lives across the globe.
2021 marks 40 years since AIDS was first discovered – a disease that is estimated to have since killed more than 25 million people worldwide.
During this year’s LGBT History Month, one television series captivated millions of viewers as it explored what life was like in the gay community in the 1980s during the AIDS crisis.
Created by Russell T Davies, It’s A Sin is a five-part series that follows a group of young men living in London at the height of the pandemic.
After watching the show, one Suffolk man reflects on what life was like during that time, how things have changed since, and how he is able to live with the virus now.
Robert, who wishes not to disclose his surname, has been living with HIV since his diagnosis in 1998.
“I left school in 1982, and then went to work in a hotel. I actually didn’t come out until I was 25, and was married to a woman in 1986.”
He distinctly recalls the media frenzy surrounding the pandemic at the time, and the subsequent homophobia that blighted the LGBT community.
“I vividly remember the infamous tombstone advert being shown on TV, and the prevalent stigma around gay people and HIV back then,” he says.
After coming out in 1990, Robert soon moved to London - and eight years later, was diagnosed with HIV in the October of 1998.
Recalling the moment he was diagnosed, Robert says: “I was actually quite shocked. Stunned, almost.
“The consultants were extremely nice - but one thing that sticks in my mind is when I was taken into a room where I was counselled first, I’ll always remember this ticking clock on the wall. When I went back for my results and they told me I was HIV positive, I remember looking at that clock ticking away, and I thought ‘well, time does still go on and life does too.’ From then on, I just got on with what I was dealt with.”
Shortly after his diagnosis, he moved back to Suffolk in 1999, where he sought support from a local trust.
“When I moved back home, my parents accessed a local service which provided HIV support, and they really benefited from it, so I started seeking support myself.
“That was also the time I started taking antiretrovirals. It took quite a while for me to respond to the drugs, because I was quite unwell and at the time had the common side effects, including diarrhoea, sickness, and skin problems. Eventually, it took about 9 to 12 months to fully feel better.”
Other common symptoms of HIV include fever, chills, night sweats, muscle aches, fatigue, mouth ulcers, a sore throat and mouth ulcers.
While Robert’s nearest and dearest were supportive of him and his diagnosis – it was potential partners who he found to be the most discriminatory towards him.
“There was quite a lot of fear within the dating scene, and if you said you were HIV positive, there was quite a bit of discrimination. However, I probably only experienced that half a dozen times, so I’d say I felt very lucky in that aspect - especially compared to other people I knew within the community.
"To be perfectly honest, I suffered more growing up in school. I was always being called slurs, but when I came out as gay, I had the full support of my friends and family. I was lucky that when I was then diagnosed, I was once again given their support.”
Now 54, Robert has been living a happy and healthy life here in Suffolk despite his HIV – and wants others to know that a diagnosis is no longer a death sentence.
“HIV is a very manageable condition today,” he explains.
“And in terms of ‘AIDS’, we actually rarely use that terminology anymore, as it’s quite stigmatising.”
Back when the virus was first discovered in the 1980s, it was originally called GRID - which stood for gay-related immune deficiency.
“However, it soon became apparent that heterosexuals could contract HIV as well, so the name was changed to AIDS. The unfortunate thing though is that AIDS has always been seen as a disease that only affects gay people, so that’s why we try to steer away from that term if we can,” explains Robert.
Advances in medicine and science over the past four decades have fortunately meant that Robert, and others who have been diagnosed, can live a normal and worry-free life thanks to daily medication.
“You basically have to take what we call antiretrovirals,” explains Robert.
These work by preventing the virus from replicating in the body, allowing the immune system to repair itself before further damage is done.
A combination of drugs are used as HIV can quickly adapt and become resistant.
“Most people are recommended to take antiretrovirals right away, whereas before, up until around the mid-90s, clinics would make patients wait until a person’s CD4 count had dropped to under 350 because there was so little medication available.”
A CD4 count is the test that measures the number of white blood cells that fight off infection. These are an important part of a person’s immune system – with a normal amount ranging anywhere between 500 to 1,400 cells per cubic millimetre of blood.
“Back then, there were only around two to three drug combinations - but now there’s around 25 different antiretrovirals a person can take. The medicine takes around six to eight weeks before a patient gets what we call an undetectable viral load.”
This is where the antiretrovirals have reduced a person’s HIV to such a small quantity within their blood. People who live with HIV and have an undetectable viral load are therefore unable to pass the virus on through sex after regularly taking antiretrovirals for six months or more, and sticking to the times they’re taken.
“Thanks to all of the excellent treatment nowadays, most people living with HIV will have a CD4 count over 500,” he adds.
“Once I started feeling better, I started thinking about going back to work. So I began volunteering with the local trust that my family and I accessed services from. It just snowballed from there and eventually I was offered a full-time job with them.”
Robert has since been working for the Terrence Higgins Trust since 2011, dedicating his life to helping people of all ages across Suffolk, offering support and education surrounding HIV.
“I’ve managed to turn what I went through, and excuse the pun, into a positive thing. I’m now taking those experiences and using them to help the community.
“When we provide training and talk to members of the public, I always say to people: ‘I never thought we would be standing here, talking about people living with HIV.’ Explaining how far we have come with the virus through modern day medicine and managing it, is absolutely mind-blowing - but we still have a lot more to do. If you look at It’s A Sin, and what things were like back then compared to now, it’s completely different.
“Watching the show, you’re blown away by how realistic it is - even down to the filming locations. I definitely recognised a couple of the bars they went to, and the hospital they used. When my husband and I saw the first episode, we took the decision to watch it weekly because it was so gut-wrenching. It’s incredibly true to how life was back then, and it’s been so eloquently done.”
For anyone in Suffolk who may be concerned about HIV, the Terrence Higgins Trust has a free confidential helpline that can be reached at 0808 802 1221. Alternatively, visit the website.
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