Born this way: HIV-positive L'Orangelis Negron speaks at the International AIDS conference
L’Orangelis Thomas Negrón was born HIV-positive and has a story that inspires countless young people living with HIV. The 25-year old will bring her story to Australia when she presents at the International AIDS Conference for the first time.
Speaking to me via Skype from her home in Puerto Rico, Negrón was ecstatic about visiting Australia and participating in the conference after attending the last event in Washington two years ago.
“It’s so exciting, because when I was at the plenary in Washington, I was like ‘Oh my God – those are the best of the best of the best working with HIV’ and now I’m there! I’m so nervous!”
Although born HIV-positive, Negrón didn’t know she was living with HIV until she was eight years old.
“I knew my mum had HIV because she told me when I was seven or eight. She wasn’t an activist, but she hung out with activists and conducted workshops. I knew there was something called HIV and AIDS and I knew there were medicines and I knew there was something called death, but I didn’t realise those were connected,” she says.
“Then mum told me she was taking the medicine because she was HIV-positive, and I started to wonder if I had it too because I was always taking the medicine with her.”
Negrón says she initially felt happy about living with HIV because it meant she could be just like her mum, but things changed when she realised her life was very different to her friends at school.
“It was 13 pills a day – plus vitamins. I hated it. Sometimes if I was sick and I vomited, I had to take them all again,” she says.
L'Orangelis Negron will speak at this year's International AIDS Conference
“I remember if I got a headache, I preferred to have a headache than taking another pill.
“I was a kid so I was supposed to do what my doctor said, and I was a rebel because I didn’t want people to tell me what to do with my body.”
Negrón was only 11 when her mum passed away and she went to live with her father who was negative at the time and didn’t want to talk about HIV at all.
“I blocked the HIV from my mind and stopped taking my medicine for six years and was part of a group who gave talks to students about STDs and HIV – but I pretended I didn’t have it. It’s like I forgot about it.”
At the age of 18, Negrón moved away from her hometown and set herself up in another city, but when she turned 20 she attempted suicide and was hospitalised.
From that moment Negrón realised if she was going to deal with living with HIV, she needed to get support.
“I was in a support group with older women, and when I say older, I mean – older – with women over 50, and I started to understand that being born with HIV doesn’t make me different from other people who got HIV by a different way.
“The thing I hear with people who are born with HIV is that they’re a victim because we didn’t have a choice to wear a condom or could have stopped taking drugs, or something like that and I hate that.”
It was after joining the support group that Negrón decided to come out about her HIV status, choosing to do so at a World AIDS Day event in her city.
“There were 300 people there and the media, and I was scared and thinking, what the fuck – why did I say that? Why am I up here? But anyway, people started calling me and congratulating me, and people I knew my whole life were wondering why I hadn’t told them [I was living with HIV].”
Now working in a HIV rapid test clinic, Negrón is in the position of giving results to patients. While the news isn’t always good, she feels privileged to be able to support those in need.
“People think that because I live with HIV that it’s easier for me to tell people they test positive, but I think it’s harder because I know what they are going to go through from now on,” she says.
“But for the person who’s positive, they think it’s a good thing because I can say, ‘You know what, I’m HIV positive too and I’ve been living with HIV my whole life and it’s possible to live with this’, and it helps a lot. I know it helps a lot.
“It’s not about living with HIV… you have a big issue going on in your life and you might think it’s the end, but when people hear stories like mine, they change their mind. There is hope.”
AIDS 2014: The 20th International AIDS Conference runs July 20-25 in Melbourne. L’Orangelis Thomas Negrón will be speaking as part of the Plenary Speakers program. Go to aids2014.org.