Living with HIV: Suffolk resident Robert’s story on World AIDS Day
For many, learning that they are HIV-positive is one of the hardest and most complicated times of their lives.
A diagnosis can stir up a multitude of emotions; panic, confusion, anger and often embarrassment.
Dubbed the ‘gay disease’ when it was first reported in the 1980s based on the fact it had begun spreading amongst predominantly gay men, misconceptions and stigma still shroud the infection in mystery and force many into silence for fear of judgement or hate.
Robert, who now lives in Suffolk, has first-hand experience of this stigma having been diagnosed with HIV in 1998.
More than 20 years have passed since he learnt he was HIV-positive.
“I was living in London at the time and I just noticed that things weren't really right,” Robert said.
“I went to the local sexual health clinic, which at the time used to be in the hospital and in those days, you had to wait two to three weeks to get a result.”
It was an agonising wait for Robert, who had painful sores in his mouth and gums and was feeling exhausted all the time, but had been putting it down to working long shifts at his two jobs, one of which was managing a nightclub.
“I went back, I think it was two weeks later, only to be told they'd lost my results. And then I had to retest again, which was horrendous,” he said.
Just 36 hours after Robert’s second test, he was given the news that he had tested positive.
“I was absolutely dumbfounded. I just couldn't understand how I had contracted it to be honest.”
Robert’s HIV diagnosis came 17 years after the first recorded outbreak in 1981, which led to what we now remember as the AIDS epidemic of the 1980s.
HIV, which stands for human immunodeficiency virus, attacks the body’s CD4 cells which fight infection.
This gradually destroys the immune system, leaving the body open to further infections and illness.
AIDS, or acquired immunodeficiency syndrome, is the most advanced stage of HIV infection.
During the early days of the virus spread, there was no preventative medicine to stop those with HIV being able to spread the infection, which is passed on through body fluid and can be transmitted during unprotected sex, sharing injecting equipment and from mother to baby during pregnancy.
By the end of 1990, more than 307,000 cases of AIDS had been officially reported, but the actual number of infections was estimated to be closer to one million.
For Robert, this was a terrifying time. Of course he had heard about HIV and AIDS, living in London and being an openly gay man himself, but he had no idea what to expect and had never met anyone else who was openly HIV-positive before.
Robert was told he had a CD4 count of 9. A normal CD4 count is anything between 500 and 1,400 cells per cubic millimeter of blood.
“On diagnosis my blood counts were quite bad and they said I had quite an AIDS-defined diagnosis, which didn't help either,” he said.
“This would have left me open to opportunistic infections, things like pneumonia.
“They were quite quizzed by it all because for the CD4 count to be as low as it was, I should have actually been in hospital.”
Three months after Robert’s diagnosis, he moved back to Suffolk to live with his family, as he became unwell due to his weakened immune system.
“I started to get very ill. I had chickenpox and shingles over Christmas, which was horrendous,” he recalled.
“I basically came back to suffer and to be with my family. I'd like it known that I never came home to die, which is what a lot of people thought.
“I'm a very positive person naturally anyway, so there was no way I was giving up to this. I wanted to learn from it and turn things around, which is basically what I did.”
While Robert said most people in his life didn’t allow the homophobia and stigma of the previous decade to affect their view of him, he did encounter others who were less understanding.
“I had to tell my parents because we've always had a very, very open relationship in terms of honesty. So that was quite a horrific thing to do,” he said.
“I also told a very, very small amount of friends but the unfortunate thing for me was, I was quite well known in London on the club scene because of the work that I did and I was actually diagnosed locally to where I lived and where I managed clubs.
“One of my club staff was a staff nurse, who was actually a gay man as well. He saw me at the hospital and unfortunately, he then decided to go and tell everybody else.”
This was incredibly upsetting for Robert, who felt it was his diagnosis to share as and when he felt comfortable.
He said, however, that he was one of the lucky ones in that his boss, other colleagues and his immediate family were understanding and kind.
A lot has changed in the diagnosis and treatment available for HIV-positive individuals since Robert was diagnosed.
Nowadays, people are tested for their ‘viral load’ which calculates the amount of the virus present in the blood.
Medication (antiretroviral therapy or ART) has been developed that, if taken as prescribed, can reduce the ‘viral load’ within the body and cause it to become undetectable and untransmittable.
This means those living with HIV and on effective treatment cannot pass on the virus and can expect to live just as long as anyone else.
Robert's life has changed with the times too and he now channels his own experience into his work for the Suffolk branch of the Terrence Higgins Trust.
The trust delivers free HIV self-test kits in Suffolk, as well as education on the virus to those who are at risk.
According to the trust, Suffolk is a low prevalence area for HIV, with just 1.12 diagnoses per 1,000 people.
In 2019, there were 453 people reported as living with HIV and receiving services in Suffolk. The same year, 10,640 tests were carried out by iCASH.
Robert works to deliver the trust’s outreach programmes and offer free contraception to people in the 'at-risk' group.
He said: “It's just basically busting the myths, talking about HIV and talking about how much it's changed today to what it was all those years ago.
“I worked in Essex for three years and we used to do a very similar thing. We would go into drug and alcohol rehab places and homeless shelters and do a 45 minute session with them.
“We do a really good quiz with them, which would bust the myths and by the end most of them will ask if they could have a test.
"That’s what I am hoping will happen in Suffolk as well.”
Today is World AIDS Day, an international date to help raise awareness, education and funds to fight the spread and the stigma surrounding HIV and AIDS.
Eloise Brame, service manager for the Terrence Higgins Trust Suffolk said: ‘‘This World AIDS Day is a time to celebrate how far we have come since the early days of the epidemic.
“People like Robert who are living with HIV and on effective treatment can’t pass on the virus and can expect to live a normal lifespan.
“The advancements in HIV treatment mean that it is now scientifically possible for the UK to end new cases of the virus by 2030 — this progress would have been unthinkable 40 years ago.
“However, stigma and attitudes towards the virus that are stuck in the 1980s continue to hold us back. They negatively affect people living with HIV and also stop others from getting tested.
“The more people who test and get onto effective treatment, the fewer HIV transmissions will happen.”
For Robert, busting the myths and educating people to make the experience of HIV-positive people as easy as possible is the driving force behind his work.
“Anybody that is having an unprotected sexual encounter is at risk of catching HIV. It's not a ‘gay disease,’” he said.
“We even try not to use the terminology ‘AIDS’ anymore, because it's very, very discriminating. Because when you talk about AIDS, the first thing people say is ‘gay disease.’
“It doesn't matter whether you're straight gay, bisexual, whatever.
"You know, we need to get rid of that message.”
Robert now lives a happy and healthy life with his husband, who he met 10 years ago, and feels little effect of his HIV now that his viral load is undetectable.
An important part of his journey has been hope. First, hope for becoming well and regaining his strength, then, hope for a life unaffected by HIV and now hope for the future and the lifting of the stigma that impacts so many HIV-positive people.
“I'm extremely healthy, I'm very thankful for that. Through Covid I could carry on with my daily life the same as the next person who hasn't got HIV, so I wasn't on any risk lists or anything like that.
“People living with HIV will die of an age-related disease, so they may just pass away peacefully.
“You can't pass the virus on if you're undetectable. You know, it's amazing. It really is amazing how far we've come.”
For more information on HIV and AIDS, visit the Terrence Higgins Trust website at https://www.tht.org.uk/. To order a test online, visit the iCaSH website at https://www.icash.nhs.uk/ or the SH:24 website at https://sh24.org.uk/.