What Two HIV Positive Young People Want You to Know
Originally Published: March 26, 2021
Revised: March 26, 2021
While the number of people with human immunodeficiency virus (HIV) has gone down in the past couple of decades, there are still plenty of people diagnosed every year, including teens and young adults. We don’t often get to hear their stories, but it’s important they have a voice to counteract any shame or stigma that persists about HIV. We should know more about what their experience is like.
Lexi, 21, of Kearny, NJ, is a young transgender woman who has been living with HIV for the past three years. Julie, 21, of Philadelphia, is a young cisgender woman who was born with HIV. Each of them has dealt with challenges due to having HIV. I had the chance to talk with both of them about the impact of HIV on their relationships and what they wish others knew.
Handling Bias in a Health Care Setting
Some people, like Julie, are born HIV-positive. Lexi, on the other hand, didn’t learn she was HIV until a few years ago, when she was a teen. “I was walking to the train station, and I saw a sign that said free testing,” she says. She wasn’t expecting the diagnosis.
Julie and Lexi wish that others—including some health care workers—knew more about HIV. “Many people are uneducated,” says Julie. “Even those who seem to have experience with research or higher education. I’ve been discriminated against by health professionals, which is why I’m very introverted and cautious.” Unfortunately, even in a medical setting, there can be bias.
Lexi says that she has learned to advocate for herself in these settings. “In good ways, HIV made it easier to not be afraid of speaking up and taking action,” she says. “I made good connections with health care providers, and they understand me better and know how to relax me. They changed from strangers to someone who has my back and is looking out for me.” However, there are times she still worries about being judged. “Like when they ask about partners and sex, it just brings me back to feeling like a stranger,” she says.
Everyone should be taught about HIV, but it’s especially important that health care providers are educated on how to treat and work with people who are HIV positive.
HIV’s Impact on Friendships
The stigma surrounding HIV goes beyond medical settings. Lexi and Julie have found challenges—and some pleasant surprises—with their friendships. It can be hard to know who to trust and how to feel comfortable.
“HIV has impacted how I make friends and what I’m willing or able to share with them,” says Julie. “The stigma is already very triggering, and I oftentimes refrain from opening up to my friends because of that.”
Lexi also notes that her diagnosis has had an impact on her friendships. “Some of my friends started talking less to me and even started babying me,” she says. “It felt very weird and awkward when I hung out with some people…. I want people to treat me like the old person who they have grown to know and became friends with. I do not want to be seen as a weak or promiscuous person.”
Lexi also points out that some friends have really been there for her, too. “I cannot forget that there was some good that came from it,” she says about her being HIV positive. “It made me realize who my friends and family were, and it made me appreciate them more.” No one should be defined by only one aspect of their identity or a medical diagnosis. People living with HIV need support, just like anyone else. And if young people were provided with accurate information about HIV in sex ed classes, they might feel more able to be supportive of their friends and family who are HIV positive.
Dating When You’re HIV Positive
Being HIV positive can have an impact on dating as well. “I’ve never dated anyone because the stigma and fear of being mocked or discriminated against brings great fear to me,” says Julie. She wishes that others knew more about HIV when it comes to dating and sex. “I would like to debunk how the virus can be transmitted and also other things related to relationships,” she says. “Like how an HIV positive person and HIV negative person are able to be together.”
Lexi has had a mixed experience with dating. “Guys like how I look when it comes to being a trans woman,” she says. “But when it came to being straightforward and letting them know about my HIV status, they got scared. They didn’t want anyone knowing they were with me because of what I had, even if it was undetectable.” Being undetectable means that medication called antiretroviral treatment keeps a person’s viral load—the amount of HIV in the blood—so low that it cannot be detected on tests or transmitted to someone else through sex.
Lexi has also encountered some guys who want to get to know her for her. She explains, “They do their research and become educated and try to understand what I am going through.” She mentions how having HIV has meant she’s had to talk more directly and honestly about things like safer sex. “It’s helped me with discussing each other’s status and bloodwork and sex life for a better understanding,” she says. Many people struggle to communicate about these things whether they are HIV positive or not.
What They Want People to Know
There are lots of things that Lexi and Julie wish that others were aware of when it comes to HIV. Being HIV positive can be challenging. “I hate having to live my life and enjoy my life with the help of a pill,” explains Lexi “I hate having to worry about cuts and open wounds with my partner. I hate having to discuss my status and potentially get judged and be looked down upon.” Julie, who feels isolated at times, says, “I would like to learn or be taught how to be more open with my experience in order to relate to others.” The stigma surrounding HIV prevents her from feeling able to do this at times.
As far as medical facts, “I wish people knew better the different stages of HIV,” says Lexi. “Because people only know about being HIV positive and AIDS but are not familiar with how medicine can help them.” She also thinks that young people should receive accurate information about HIV on a regular basis. “People should be educated every year while in their teen years, and updated on the information they receive,” she says. Julie agrees. “I wish people would be more open to learning and understanding how the virus affects many people,” she says. “It can be very manageable and easy to maintain with the right amounts of medications, health care and social/personal support.”
Lexi wishes that others wouldn’t assume things about people who are HIV positive. “The stereotype I would like to eliminate or debunk is that HIV people are promiscuous,” she says. “Anyone can get it, and it is not just a gay thing or a thing that affects only the LGBTQ community.”
Most importantly, those with HIV have jobs, relationships and feelings, just like anyone else. “I wish others knew that HIV is not a death sentence,” says Lexi. “It’s not something to be ashamed of.”
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