‘We were so scared’: Four people who faced the horror of Aids in the 80s

I t can take a long time for society to see the past clearly. In the case of the HIV/Aids epidemic of the early 1980s, it has taken almost 40 years. But now, thanks to Russell T Davies’s moving five-part Channel 4 drama series, It’s a Sin, we are all able to look at a vivid, troubling and yet ultimately uplifting picture of those dark and deadly days.

To younger audiences, it may be shocking to learn just how excluded and hidden the gay community was from mainstream life. Homosexuality had only been legal since 1967, the age of consent was still 21 and same-sex civil marriage was a quarter of a century away. It was routine, as It’s a Sin reminds us, for gay men and lesbians to conceal their sexual identities from their families and employers.

That was the furtive environment in which Aids surfaced. The first mysterious cases were reported in the US, where otherwise healthy people began suffering a catastrophic collapse of their immune systems. Early on, it was referred to as the “4H disease” because it appeared to affect “homosexuals, heroin users, haemophiliacs and Haitians”. Then it became known as “Grid” – gay-related immune deficiency – before acquired immunodeficiency syndrome was finally coined (Aids).

As it spread to the UK, a community that was just beginning to find its public voice and confidence was ushered back into the shadows by a homophobic press campaign. Terms like the “gay plague” were widely used and the belief was fostered that the disease could be transmitted by any kind of proximity.

The gay community was held in suspicion by all sectors of society, including the health service where, again as Davies shows, Aids patients were often placed in harsh conditions of isolation. It was largely social ignorance rather than community protection that drove such practice. As with the current pandemic, many people died lonely deaths, only in the case of HIV there was no medical reason for their confinement.

Yet as bleak as the period was, it also gave birth to an upsurge in gay activism and support groups that helped transform the position of the gay community in this country.

Here, four people who were at the forefront of the struggles brought so powerfully to life in It’s a Sin, tell their stories in their own words.

‘People were being chucked out on the street by landlords and room-mates’

Rupert Whitaker, co-founder of the Terrence Higgins Trust

There was no idea that Terry’s illness was connected to this American disease, as it was called then, when he first went to hospital. They just thought it might be contagious so they put him in isolation. I was not allowed to go in to see him. I had to look through a porthole into an isolation room. Anyone who went in was in full PPE. I wasn’t told anything. Our relationship was not recognised until he had, literally, just died. I went to see him and they were trying to resuscitate him as I was waiting at the entrance of the ward. I’d brought some lollies and things he’d wanted. A nurse came out and put me in a side room and said, “I’m very sorry, he’s just died.” She asked me who I was and I said, “I’m his boyfriend.”

Afterwards, when we were setting up the trust, I wrote to his consultant asking for confirmation of the cause of death. And he said, ‘Well, since you’re not family, I can’t tell you anything. But once you’ve set up the charity I can probably tell you something.’ It was Catch 22. We couldn’t set it up until we got the information from him. I paid for the funeral out of my student grant. I was 19. So it was like, you can do that, but we’re not going to tell you how he died.

People were being chucked out on the street by landlords and room-mates. One person I knew was Irish. I was very close to him and he died suddenly. He refused to get tested because he couldn’t cope with the idea. His family swooped and kicked out all the gay friends and forced him on his death bed to recant his homosexuality and accept the last rites or he was going to burn in hell.

You had the most vile things done to people who were incredibly vulnerable. But I think we wouldn’t have gay marriage now if it hadn’t been for Aids, because it showed first of all that we were real people and suffering.

Rupert Whitaker is a psychiatrist and one of Europe’s longest-surviving people with HIV. He co-founded the Terrence Higgins Trust, named after his partner who was one of the first people in the UK to die from A ids-related illness in July 1982.

‘It was a time of confusion and then a time of considerable fear’

Lisa Power, sexual health and LGBT rights campaigner

I was working on the Gay Switchboard during the Aids outbreak. We were basically a helpline to give out information on what gay bars there were in Burnley or to support someone who was feeling lonely and wanted to come out. Then a pandemic hit us and we really didn’t know what was coming. People ran in all sorts of directions. Some thought we should all give up sex. Some said it was just gay men only. There were so many theories going around. Some said it was a plot by the CIA. Some people just didn’t believe in it and said that it was all the pharmaceutical industry trying to sell drugs, just as they’re saying now about Covid.

It was a time of deep confusion, and then as people got to know about it, a time of considerable fear. We were completely unaware that this was a virus you got, and it then lay dormant for a quite a while, transmissible but not causing any obvious damage.

A lot of young gay men had moved to London so that they could be gay in their social life but didn’t have to tell their parents back home. We were in a situation where some people found out that their son was gay when they saw him in a hospital bed, wasting away. And that provoked all kinds of reactions. Some parents were brilliant and incredibly supportive, and actually started to volunteer with the organisations that were trying to help people with Aids. And then you got others who didn’t want to tell anyone what their son had died of.

I remember researchers talking to health authorities around the country. They said to one authority, “we want to know what you’re doing about Aids”. They said, “Oh, nothing because we don’t have any gay men here. Try the next borough across, they’ve got a theatre.”

This was the time when gay pubs didn’t have windows, (a) because they would have been stoved in and (b) nobody would go in if they could be seen from the outside. This was a time when nobody was out as gay in the police and very few were out as gay in the health profession, because it got you into all kinds of trouble.

But there were thousands of people who got stuck in all over the country trying to help out, lots of them lesbians, lots of them other gay men, who were terrified but continually faced their fear to provide essential services.

‘Amazingly we had lots of fun. People were still trying to live their lives’

Jane Bruton, clinical research manager at Imperial College

In 1987, I was a nurse and joined an infectious disease unit in Leicester that was the referral centre in the city for people with HIV. When I first joined as the sister, the patients hadn’t been treated very well. There wasn’t any sympathy or empathy. There were very strict rules about visiting. The patients had very little freedom in any sense of the word, and they were young men dying.

The nurses weren’t as bad as not taking meals into them [as happens in It’s a Sin] because these nurses were infectious disease nurses, so they weren’t so cruel as a lot of other staff were that we know of. But they weren’t interested and they didn’t sit or talk or help.

I specially wanted to work in HIV because of what what was happening. So I tried to change the approach to care. I organised gay awareness sessions, and actually that helped quite bit. I tried to change the way people nursed, so we were much more patient-centred. I spent a lot of time with the patients. One I remember clearly. He couldn’t communicate. He was so scared and so isolated that he couldn’t speak or look at you at all. But eventually I broke the ice and he became quite active once somebody showed him some care and love, which he didn’t think he deserved. There was a lot of self-judgment going on among patients as well.

There was no effective treatment until 1996. What we had were treatments for all the hideous illnesses that people were contracting, such as as very bad pneumonia, horrendous diarrhoea, and cancers like Kaposi’s sarcoma.

Then there were people with oesophageal candidiasis, all the way down their oesophagi and literally coming out of their mouths. The only treatments we had were toxic in themselves.

Also, the wasting was very hard to deal with. We had a gentleman who was dying and he’d saved a suit that he wanted to be dressed in. When we laid him out, it was so sad because he didn’t fill his smart, modern suit in any way.

Yet, amazingly, we also had lots of fun. People were still trying to live their lives. I’m still in contact with the people I worked with. They’re the only ones who know what it was like. We’ve all talked about It’s a Sin on Facebook. It’s brought a lot of memories back. I’ve cried in every episode.

‘There wasn’t a day I didn’t think about it. It was a major worry’

Ian Green, chief executive of the Terrence Higgins Trust

I was 18 in 1983 when It’s a Sin begins, and just exploring my sexuality. I remember my father used to read the News of the World, embarrassingly, and there was a salacious headline about the chaplain at Chelmsford prison. He died of an Aids-related illness. That was the moment it really hit home to me: if it can affect an Anglican vicar, it could certainly affect me.

HIV was a major worry for me as a young gay man. There wasn’t a day when I did’t think about it, and certainly every time I had a sexual encounter it was in the front of my mind. It inhibited me developing good close relationships. A lot of my sex experiences were very furtive because of that.

I was completely in the closet for most of the 1980s. It was not something I would discuss with my old circle of friends and certainly not with my family. Not only was being gay not socially acceptable but also on top of that there was a deadly virus, a “gay plague” I couldn’t get my head around that.

I had a big fear of dying on my own because I’d witnessed other friend and partners who’d died on their own.

I became HIV positive in 1996. I was very lucky I was diagnosed at a time when antiretrovirals were becoming available. The side-effects were crap but they prolonged my life, and I now have a normal life-expectancy.