The Day I Was Diagnosed
Last updated: March 2023
I was 11 years old when I was diagnosed with HIV on March 26, 1987. There were no effective treatments available at the time, which meant the prognosis wasn’t good. At worst I’d be gone in six months. Best case scenario?
Most people never forget the day
Today, I am undetectable. My t-cell count is robust and stable. I’m living a life that was near impossible to imagine when I was a teenager. A large part of my survival during the pre-treatment era was having a supportive family and a safe roof over my head.
Most people never forget the day they were diagnosed with HIV. My mom told me a few months after the diagnosis date but I can’t remember that moment. There’s a hazy memory of mom coming into my room to talk to me about something serious. I get a lot of -from my perspective- unnecessary added sympathy because of how old I was when I was diagnosed.
Of course, it wasn’t easy. But it isn’t easy for any of us.
Being shielded from painful aspects of HIV
As a kid, I was safeguarded from some of the more painful aspects of an HIV diagnosis. I didn’t have to think about getting an HIV test before working up the courage to do so. I didn’t know my bleeding disorder put me in one of the initial high-risk groups. Ultimately, it’s like the difference between jumping into a cold pool and inching your way in. When the water is icy, it sucks no matter which way you slice it.
My heart goes out to anyone that gets blindsided by a positive HIV test result. It’s never easy news to digest, whenever and however it comes through. I’ll never tell someone that is newly diagnosed how lucky they are. That’s not what they need to hear. Usually, they just need someone to listen to them.
Then and now
When I was diagnosed I just wanted to ignore it altogether. I noticed AIDS in the media and the stark tragedy of the AIDS epidemic. Thirty-five years later, we’ve lost millions of beautiful people. Those affected by the losses carry that pain with them through the rest of their mortal journeys. Today there is the hope for longevity provided by science and access to care.
As great as things are today, not everyone with HIV has access to care. Yet another tragedy to digest.
The stigma has stuck around
Like the checkered print, HIV stigma has also stuck around since the 80s. The newly (and not-so-newly) diagnosed still worry about how their families will handle the news. Many with HIV keep that info on lockdown as a result.
And who could blame them?
Speaking out about being HIV positive was life-changing for me. But I never encourage people to go public if they aren’t ready. When I posted my status online in 1996 it felt right. Not doing so would have been harder at the time.
I was 20 and needed something to do. The day I realized that my self-stigma was based on how I thought people-ignorant people!- might react to my status a dark cloud lifted.
If it wasn't for HIV
The thing that worried me most about HIV was the prospect of finding love. I’ve been in a healthy, loving relationship for half of my life now. And I would have never met my partner, Gwenn, were it not for the medical condition.
Gwenn was a sexual health educator. She was looking for someone with HIV that was interested in educating high school students about life with the virus. A local AIDS Service Organization recommended me, thank goodness!
It was a plot twist that newly diagnosed me could have never imagined.
But that’s life. And where mine is concerned, HIV represents many of the mountains, as well as the valleys. I didn’t have to be public with my status to win over someone like Gwenn, but I did need to be comfortable in my own skin.
And that took time.
Take your time
If you’re newly diagnosed, give yourself as much time as you need. I didn’t say “HIV” for close to ten years.
I’m humbled by the amount of days I’ve been able to have since that lab test came back positive on March 26, 1987. At age 47, I’m probably taking better care of myself than I ever have before.
Despite my good labs, safe roof and the love in my life, I understand that no one is promised tomorrow. That’s why I feel like I owe it to the kid that I was on that Spring day, all those years ago, to enjoy the hell out of what has been a wild future.
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