Ending the stigma of HIV infection: Scottish patient shares her experience of coming out as HIV positive

A woman living with HIV says the “hardest thing about living with HIV isn’t the virus itself – it’s the stigma”, as she teams up with a leading HIV charity to raise awareness of how treatable the disease is, and how it can’t be transmitted by people taking medication.

Activists assemble at Trafalgar Square for a Fighting HIV Stigma protest. Picture: Sinai Noor/Shutterstock

“All I remember thinking was how I can kill myself,” said Monica Marques, recalling when she first learned she had been infected with the Human Immunodeficiency Virus (HIV).

Ms Marques, a Portuguese national, was first diagnosed in the hospital in which she worked, but the disease was missed for over nine months due to her not being part of an “at-risk” group.

“I didn’t fall into a demographic that you’d usually associate with HIV,” said Ms Marques. “No-one saw me as having a lifestyle where I could get HIV, and education and understanding about HIV was riddled with misconceptions.

Monica Marques is trying to end the stigma of living with HIV. Picture: Waverley Care

“I had all sorts of medical interventions to try and work out what was wrong, and it wasn’t until options had been explored that I then had a HIV test.

“The doctor – who was both my colleague and friend - told me very quietly at my bedside that I had tested HIV positive, and then left.

“I think she was in shock too and we’re very good friends. I was then taken to a room, given paper and a pen, and told to write down all my sexual partners.

“At that time, there was no other support. Nurses and others would just avoid me.”

The chief executive of Waverley Care, Grant Sugden, says Scotland is “facing another monumental public health opportunity – to end new transmissions of HIV by 2030”.

After her diagnosis, Ms Marques moved to the UK because she “wanted to remain anonymous”, and would even travel back to Portugal for treatment rather than receive treatment in Scotland.

“No one in my work in the UK knew I was HIV positive so getting time away from work was challenging, and flying to and from Portugal was tiring and expensive,” said Ms Marques. “I decided to bring everything to the UK and face HIV.

“It was at this time I met [HIV charity] Waverley Care, we just had one chat but I’ve never forgotten it.

“I knew nothing about the policies at work for people living with HIV and I was worried I’d be asked to leave the country. A worker at Waverley Care planted the seed for me to start working with my community.”

Ms Marques said that after approaching Waverley Care “a huge weight was shifted”, and the people she met along the way became “my source of strength”.

“If I was to share one thing that I want everyone to know it would be that the hardest thing about living with HIV is the stigma you receive,” said Ms Marques, “it isn’t the virus itself.”

“That stigma comes from others who don’t know enough about HIV and its reality today. Some people are lovely and embrace you, and others drift away slowly and try not to interact with you – they don’t even want to know.”

If left untreated, HIV develops into Acquired Immune Deficiency Syndrome – AIDs.

However, HIV infection is now very treatable, and with the right medication becomes untransmittable. Infected people now have roughly the same lifespan of those not infected with HIV, in sharp contrast with the death sentence it used to be.

According to Waverley Care chief executive Grant Sugden, Scotland is “facing another monumental public health opportunity – to end new transmissions of HIV by 2030”.

“It may not have seemed possible during the height of the HIV/AIDS epidemic of the late 20th century but, thanks to game-changing medication, people can live long, healthy lives with HIV and cannot pass the virus on,” said Mr Sugden.

“We are at a point now where we can end new diagnoses, for good.”

Recently, the Terrence Higgins Trust Scotland and the Scottish Government aired the first TV ad about HIV since the infamous “Don’t Die of Ignorance” tombstone ad of the 80s.

“While the TV ad is a brilliant way to start the conversation,” added Mr Sudgen, “we know that people continue to hold negative views towards people living with HIV.”

Ignorant attitudes to the disease persist. Scottish Government-funded research, carried out by YouGov and produced by the Terrence Higgins Trust, found “worryingly low levels of knowledge about HIV”.

Just one third (35 per cent) of people in Scotland would be happy to kiss someone living with HIV, despite it being known since the 1980s that HIV can’t be passed on through saliva.

The data also shows almost half (46 per cent) of people in Scotland would be ashamed to tell other people they were HIV positive. The data shows a clear lack of knowledge regarding the progress made in the treatment of HIV. People on effective treatment for HIV cannot pass the virus on through sexual contact, and would even produce negative HIV blood tests.

Despite this, just a third of Scots are aware that people living with HIV and on effective treatment can’t pass it on to partners.

The prejudice and fear of the 1980s doesn’t tally up with the reality of present-day HIV infection in Scotland.

According to Public Health Scotland (PHS), in December 2022 there was an estimated 6,600 people living with HIV in Scotland, of whom 6,150 (93 per cent) had been diagnosed.

Research from PHS found that for the first time in over a decade, new HIV diagnoses among heterosexuals were higher than for gay and bisexual men.

Last year in Scotland, 42 per cent of all new HIV diagnoses were in heterosexuals, compared to 29 per cent in gay, bisexual and other men who have sex with men (GBMSM)

According to the Terrence Higgins Trust, “whilst GBMSM remain more impacted by HIV relative to population size, targeted interventions in this group have led to one of the big success stories of the epidemic.”

The introduction of PrEP – standing for pre-exposure prophylaxis – can reduce the risk of getting HIV from sex by about 99 per cent when taken as prescribed.

Mr Sugden said: “The Scottish Government has committed to ending new transmissions of HIV by 2030, but we need to see transformative policies to keep us on track: opt-out testing, expanding access to PrEP, and ending HIV stigma are necessary actions to help us get there. We must continue leading the way to get to zero by 2030.”