What It’s Like Living As An HIV-Positive Teen
When she was an infant, Ashley Rose Murphy was extremely sick. Murphy was born with HIV, which she contracted from her late birth mother. After spending over three months in a coma, she was placed into palliative care, taken in by adoptive parents, and given just weeks to live. Over 18 years later, the teen’s very much alive—and making her voice heard as a fierce advocate for HIV awareness.
“I found out I was HIV positive when I was 7 years old,” Murphy tells SELF. “When my parents told me, they sat me down and they said, ‘Ashley, the reason why you take all of these medications and why you go to all these doctor appointments is because you have a virus called HIV. At the time I didn’t understand what that meant at all, I was in grade two. I was just very oblivious and was like, ‘OK, so what’s for dinner?’” Her parents and doctors told her she shouldn’t tell anybody, but Murphy didn’t understand why. “I asked, ‘Why do I need to keep it a secret? I didn’t do anything wrong.’” Since then, Murphy has spoken to thousands of people, hoping to help educate others and reduce the stigma around HIV.
Murphy says the widespread fear of HIV stems from a lack of knowledge, which is why she speaks so openly about it. She speaks at school and conferences to educate both kids and adults about the virus so they understand what it is and what it’s like to live with it.
She started speaking at medical conferences in Canada (her home country) when she was 10 along with other kids she had grown up with in the medical system in Toronto. She attended a support group for children with HIV, and they occasionally went to speak with groups of medical professionals. "The other kids wouldn't speak if there was media," Murphy recalls, “but I didn’t really care." Her mother tells SELF it was hard at first to see her daughter exposed like that, but Ashley was always comfortable. “I’ve always loved performing and singing, so being in front of people doesn’t scare me at all,” Murphy says.
When she got to high school, the speeches became a little more nerve wracking. When Murphy was in 10th grade, she spoke in front of her biggest audience of 16,5000 in Ottawa, Canada, for an event series called We Day. “Even though I had been out for so long, this was going to be my biggest crowd yet and my school was live steaming it in the lobby,” Murphy explains. “A lot of kids at my school knew, but mostly it was the kids in my grade who had gone to my elementary school, less than 200 people.” After this, her entire high school of 700-or-so kids would know she was HIV positive.
“As I started progressing in high school, I told more people,” she says, but in the beginning, she kept kind of quiet, unsure of how high school kids would react. “I didn’t know if they were going to be mean,” Murphy says. As she made more connections and her friendships developed, she started to tell people. “I’d say, ‘I have something to tell you, I’m HIV positive, I was born with it, if you have any questions let me know.’ And everyone was very positive toward it,” Murphy says.
That doesn’t mean she’s never experienced discrimination. Murphy says most of it has come from adults, not her peers. “One of my first tastes of stigma was when Children’s Aid Society was looking for a family to take me,” Murphy recalls (she doesn’t remember it herself, but was told the story when she was older). “I was placed with a woman before I started getting really sick. She didn’t know I had HIV, but when Children’s Aid called her and asked if she would take me back and they told her about my status, she refused to.” An incident that she remembers clearly happened when she was 7 and a classmate’s mother was uncomfortable with her being at a sleepover party. She also had a teacher her senior year of high school who thought she would transmit the virus from sharing a guitar with other students (because her skin cells would rub off onto the strings). In the same class, a broken guitar string scraped her finger and drew a little blood, leading to a whole fiasco where the department of public health was called—they “basically laughed,” Murphy’s mother tells SELF. But Murphy says in the end, a big deal was made out of nothing, and she felt very uncomfortable.
Last year, she went to speak to her brother’s kindergarten class about HIV/AIDS, per the teacher’s request. “I talked to the first group of kids and then after I was done speaking, I got confronted by the principal and he said, ‘Can you not use the word HIV in your next presentation?’ That really hurt,” Murphy says. “It’s crazy because that’s discrimination right there. I was asked to speak at the school, and here I am facing it.” It's kind of tough to raise awareness and have an honest conversation about something like HIV when you're not allowed to even say the word.
Murphy says she’s been lucky and most people have been very accepting, but that many of the HIV-positive young people she’s met through support groups and programs for kids with HIV have been bullied so much they’ve needed to switch schools. The reactions can be seen as an unfortunate side effect of the progress made in HIV treatment and prevention. “Forty years ago this was a huge topic everyone was talking about, but today no one really talks about AIDS or HIV,” says Steven Izen, founder and CEO of Lokai, a charitable retailer. “Not many people are talking about it now.” Among Lokai’s partnerships is one with (RED), where proceeds from their sale of limited edition bracelets goes to providing life-saving AIDS medication to communities in Sub-Saharan Africa. Murphy teamed up with Lokai to help spread awareness and clear up misconceptions about HIV/AIDS as part of the bracelet’s launch.
Murphy’s infection is controlled by medication, which she’s been on all her life. “Right now my viral load is undetectable, meaning the number is under 50, which means my illness is very controlled,” Murphy says. “It’s not in my blood, only in my lymph nodes and brain.” The virus gives her a weakened immune system, so she gets sick more often, and it takes her longer to recover than it would for a healthy person.
The medication that controls the virus also comes with side effects that have to be managed, like hair thinning and osteoporosis. Some people also experience liver problems, but Murphy's so far has been functioning well despite the stress. Generally, Murphy feels well—unless she forgets to take her medication before bed and has to take it in the morning. Her mother says if this happens, she can barely function. "She has to hold onto the walls or a support person to walk, has difficulty speaking or thinking clearly, and is weepy." It's only happened twice, though. She’ll have to continue on medication to keep the virus in check—there is no cure for HIV—but it means she can live a mostly normal life (she just has to opt for water at college parties, since she can’t drink on her meds).
Murphy doesn’t announce her HIV status to the grocery store cashier or to new acquaintances out of the blue like she did as a kid, but she does stand in front of crowds and openly talk about having HIV. Her status is right there in her social media bios. She’s upfront and honest about it with friends and classmates at York University in Toronto, where she studies theater. “It’s not really a secret. Pretty much with anyone I meet I’m really open about it now,” she says. Murphy credits growing up in a family of 10 kids, all with differing special needs, and extremely supportive parents, for how she’s been able to live without shame or fear. “They’ve always taught us the importance of being yourself and loving yourself and being comfortable with who you are and to not be ashamed. And so I kind of took their sayings and ran with it.”
She hopes that by using her voice and living as an example, she can help the world be a more understanding place for those who are afraid to speak about having HIV, so they can let go of the shame and feel comfortable in their own skin.