‘A lot of young people think HIV is a 1980s thing’

WORRIED about stigma and public ignorance Mercy Ngulube, now 20, campaigned anonymously with the Children’s HIV Association for two years until winning a Diana Award in the spring of 2017.

At that point, aged 18, she had moved away from home in Cardiff to university and felt confident enough to go public in a bid to “normalise” the virus that still carries so much stigma.

A year on, Mercy is a fluent, gutsy speaker and campaigner who has spoken about HIV and her experience at international conferences and events across the world, given TEDx talks, taken to Twitter to counter ignorance and misinformation and served as chair of the Children’s HIV Association youth committee.

She goes into schools to speak about HIV for the Children’s HIV Association, has interviewed Prince Harry, Charlize Theron and Eurovision winner Conchita to raise awareness about the virus and in July this year addressed the International Aids Conference in Amsterdam.

In between all this, the former Cardiff schoolgirl is studying for a degree in English Literature at Leicester University.

Meeting Mercy in Cardiff the day before she returns for her third year at university it is hard to imagine her as someone who found it hard to talk about HIV only a few years ago.

What has happened in the last four years would have seemed unimaginable to the teenager coming to terms with a new diagnosis about a virus she did not know much about.

“I was told I had HIV by my doctor and my parents,” Mercy recalls. “When you are told, it’s like this is something you can’t talk about. I had to learn to live a double life, but in adolescence all you want is to fit in and be part of society.

“It’s hard to do that when you’re trying to manoeuvre a huge secret and I did not have the language or skills to do that.”

Describing being told she had HIV as “a steep learning curve”, she says the guidelines now are to tell children born with HIV when they are around eight years old.

“When I was a bit younger there were only about 20 young people born with HIV growing up in Wales so it was really isolating. Only recently has there been funding for projects for kids in Wales born with HIV.

“Growing up for me there were no support networks. The first other young person with HIV I met when I was 16 in London when I went on a residential with the Children’s HIV Association and they began to run a schools campaign.

“I think schools and teachers don’t know enough about it.

“The general message from society in terms of speaking about HIV is that it’s not spoken about so I did not think I could speak about it in the way I do now.”

Mercy also felt protective about her family: “By speaking about it I would not just be going to expose myself but my whole family. When you say it you can’t take it back.”

It took a prince and an award to convince her of what she knew inside, that she had the voice to campaign publicly.

Meeting Prince Harry in Durban, South Africa, at the International Aids Conference in 2016, Mercy was invited with other members of the Children’s HIV Association to a discussion at Kensington Palace and a year later accepted a Diana Award from him.

Prince Harry had recently had an HIV test on Facebook Live and had spoken publicly about how voices were needed to normalise the virus.

The Welsh teenager was struck by his words. Since being told she had HIV, Mercy had told some close friends but had not gone public on her diagnosis. Now she decided the time was right to talk about her experiences and the virus.

“I had just started university at the time but had not come out publicly (as HIV positive). Prince Harry said it would be great if someone would come and normalise HIV at that award in 2017 so when I got the award I came out. The award is what prompted me to come out.

“Princess Diana made huge strides in alleviating the stigma around HIV and her boys are carrying that on.

“I am very aware I am only one of very few kids in the UK living with HIV and when I have a voice they have a voice.

“It was weight off my shoulders talking about it. I have never known anything different in my life. This is my life and I’m used to it. I think I have always been quite opinionated, so I had the personality to do this.”

Having made the decision to speak, Mercy hit the ground running talking about HIV at home and abroad, travelling to countries as far as Botswana and Lesotho to campaign.

She now wants to focus on ensuring people get healthcare and medication and fears many people, especially young people, don’t know enough about HIV, the risks and the treatment.

“A lot of young people don’t think it’s a problem and think it’s a 1980s thing.

“We have come far since then in terms of science but it’s still about getting young people engaged in healthcare and going for sexual health tests.

“We don’t generally have people dying from Aids now in this country. A lot of people are living with HIV on medication, so there is a bit of complacency.