This article with interviews by RonniLyn Pustil first appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
ASHLEY ROSE MURPHY, 17
Student and volunteer speaker
Diagnosed with HIV at 6 weeks old
When I was diagnosed at six weeks of age, I had PCP (pneumocystis pneumonia) and was in respiratory distress.
I was always told by my adoptive parents (they adopted me when I was three) that I had a bug but not the name of it. When I was seven they told me the name of it and said I should keep it a secret. I didn’t think I should have to because I hadn’t done anything wrong, so I just told people. I was uninvited to birthday parties, had neighbours say I couldn’t play with their kids, had some friends’ parents (just last year) give me disposable plates, cups and cutlery. And I’ve had a bit of online bullying, too. But I keep going and it’s getting better.
I started public speaking at age 10, at an HIV conference, then at galas, on TV and now I do motivational speaking. I never intended to be a motivational speaker, but I started to see that my words could make people with HIV feel less alone. I just want to make a difference and decrease the stigma, educate people.
HIV-positive youth are sometimes left out of the dialogue. But we are out here and we are fighting for the same things: zero discrimination, access to meds, a cure, love and acceptance. Youth who are born with HIV have a different reality. We are not angry with ourselves, as we had no say in the matter. No one I know is angry with their mom for passing it to them—we know it was not intentional. We have never known anything else; we have always lived with HIV.
My mom says the teen years are hard enough without having to deal with HIV but I like to focus on the good things in my life that have come to me because I’m HIV positive: my big adoptive family, summer camp and clinic friends, travelling and interesting things I have done. If you dwell on the negative stuff, it brings you down. I choose to take the stuff in my life that others see as a problem and turn it into a strength. In my speeches I often say, “Rock your differences, own them and be you.” I find a lot of peace and happiness from doing that.
MICHAEL SCHNEIDER, 30
Program coordinator, Positive Youth Outreach (PYO)
Diagnosed with HIV at 25
I run the PYO program at ACT (the AIDS Committee of Toronto), for people ages 16 to 29. (It’s our 25th anniversary!) I spoke with our youth discussion group to ask them what they would like the HIV-positive community to know about poz youth. The group is made up of diverse men and women who are straight, gay and trans, and range in age from 20 to 28.
Many young people with HIV today feel separate and segregated from the HIV community. It isn’t like when HIV first came around over 30 years ago, with people rallying together, supporting and advocating for one another. These days, people seem to be more grouped together either by age or race within their communities.
We hear a lot of “you’re young and you didn’t go through what we went through,” as though younger people with HIV haven’t earned their dues and are riding on the coattails of all those who came before us. What people tend to forget is that some youth were born with HIV and have been living with it for 20 years or longer, resulting in an entirely new experience and identity. Due to this lack of understanding, HIV-positive youth sometimes feel that they are looked upon as pariahs and feel stigmatized by HIV-negative people as well as older people who are living with HIV (PHAs).
Because we’re from a different generation, we view HIV differently. We think of it as a manageable condition and do not identify ourselves primarily as HIV positive. Our identities are those of “everyday people”—who go to school, have jobs and create meaningful relationships. We are more likely to discuss music, our astrological signs and future aspirations than talk about living with HIV to strangers. We are less likely to wear our HIV status like a name tag or label.
We learned about HIV in school, we want to be healthy and we know to go on medication, but because there’s more of a disconnect with the virus, the effects of not taking the meds seem far in the future. We’re thinking about paying off debt, travelling, going to school, dating and so on. And this impacts our adherence. The benefits of the new one-pill-a-day HIV meds are truly felt by us. We are grateful for that.
RORY S., 27
Hotel admin and music teacher
Diagnosed with HIV at 21
On a day-to-day basis, HIV doesn’t even enter my mind because the treatments are so awesome. If it wasn’t for my YouTube channel (TheJelloSlapper) I doubt that I’d really consider it an issue. (My video blog follows me, a gay man living with HIV, through my weekly struggles, victories and adventures.)
I think that younger gay men like myself are incredibly fortunate to be this “second generation” of PHAs. Having the resources and treatments developed by those who came before us in the past 20 years has allowed us to focus more on social issues such as stigma. HIV stigma is the number 1 issue that I struggle with.
I live in a city that isn’t known for being the most progressive when it comes to HIV. Many younger PHAs I know feel the need to hide their status for fear of being rejected by those who are not aware of the benefits of treatment.
But, thankfully, PrEP (pre-exposure prophylaxis) and treatments that allow an HIV-positive individual to have an undetectable viral load have already started to revolutionize the way PHAs are looked at and treated by the general public. Over the past two years I have noticed a huge increase in positive-friendly interactions with gay men. Undetectable statuses and PrEP have taken much of the fear away from HIV-negative individuals, allowing them to form strong and healthy relationships with PHAs.
That being said, disclosing my status is never easy. However, as I get older, and the people around me learn more about HIV, it does become less cumbersome.
JON CLAGGETT, 30
Diagnosed with HIV at 28
First of all, I’m OK! Being diagnosed was probably the worst part of the entire experience. From there, every day got a little bit better, and as my health improved, I felt better about the situation. Finding out that I tested positive was devastating but I read a lot about HIV and made a conscious effort to get as healthy as possible as fast as possible.
When I was diagnosed, I had a low CD4 count and a high viral load. It didn’t take long before my CD4s were in the high 1,200s and in six months my viral load was undetectable. Besides having to remember to take one pill a day, my life is virtually unaffected by the disease. I’ve been fortunate enough to fall in love with someone who is negative and our relationship is just fine.
That said, this is what I think people need to know: End the stigma! The hardest part about being diagnosed was the feeling that I had done something terribly wrong or that I deserved this. I felt that as a gay man I had become the worst possible stereotype. I felt that my social life, and subsequently my love life, would be brought to a screeching halt. Fast-forward a few months and none of this was true.
I had been in a committed relationship with someone who wasn’t faithful, and that led me to have to deal with HIV for life. But the larger community still often views HIV as a disgusting thing—that the person who has the disease must be a bad person or they must have been a slut or a junkie.
Testing is what needs to be focused on. People need to feel good about getting tested; they need to feel confident that no matter the outcome they are going to be OK. People need to not feel bad, or secretive, or dirty about getting tested but instead empowered by it.
Knowing your status is a good thing. And even if you happen to be positive, you’re still OK. You’re still the same person you were before you were diagnosed. Get your meds and health in order and you’ll be doing better than the average person.
Ending the misconception that HIV is a death sentence, or a gay thing or only for bad people is the next step. Educating people and bringing a positivity to testing while changing people’s opinions about HIV in general is where I think the HIV community needs to focus its efforts.