With the modern advancement of treatment, it is finally possible to redefine what it means to be living with HIV. An HIV-positive person can be healthy and live without sacrificing anything because of his or her disease. A person who identifies as living with AIDS, however, is often not afforded the same luxury. AIDS, after all, isn’t a disease, but a diagnosis that is given when someone is truly “sick.”
Many long-term survivors, however, hold onto the identity of someone who is living with AIDS as a badge of honor or right of passage even after their CD4 count rises above the level of diagnosis.
And while it is easy to understand the emotion behind holding on to AIDS, it can also keep many people in a state of trauma that can be toxic to the soul.
While attending AIDS Watch 2016, the largest U.S. constituent based advocacy event held in Washington DC, I had to the chance to sit in on a discussion with a group of long-term AIDS survivors. While many topics were up for discourse, there was a central theme and one common problem that seemed to resonate among the group. The theme was anger and the problem was where to go from here.
As I listened to the very real problems that many of these long-term survivors were dealing with, I heard one man explained why he still used the term “living with AIDS” to describe himself even though he wasn’t experiencing any complications and his CD4 count was well about 500.
“Somewhere, on some piece of paper, the word ‘AIDS’ is written next to my name,” he said. “I own it, it’s mine and just saying ‘HIV’ does not explain the journey I have gone through.”
Although his reason is easy to sympathize with, I couldn’t help but think that his death grip around “AIDS” was exactly what was keeping him from living well today. His experience with AIDS was so traumatic, so horrific, that he is forever stuck in that place even though the nightmare has ended. Today, he is healthy by his own admission, yet he cannot enjoy his second chance at a life because of the trauma he went through to get there.
Showing respect by lending a hand.
It is true that a young person who is diagnosed with HIV today will never come close to understanding the heartbreak and hardship that so many faced during the height of the epidemic. Younger generations living with HIV should do any and everything to connect long-term AIDS survivors and learn about the tragic journey that got the new generation to a-pill-a-day. But there’s something else.
As a generation who has not suffered the crippling grief of the AIDS epidemic, we must do more than just try to understand what it must have felt like. We must help out those who lived through the AIDS crisis by showing them how to live with HIV without letting it define who we are.
That’s right. In a strange twist of fate, it turns out that the answer to “what's next” for long-term survivors may just be to rest on the shoulders of those who have suffered less in order to find a way to move on. It’s time to long-term AIDS survivors to soften their clenched fists that have been fighting year after year and take the hand of someone who has had a different experience. And maybe, just maybe, this will bring a peace that is long overdue.
The question was where to go from here. The answer is away from AIDS.
AIDS is not a disease. It was a diagnosis created to designate that a person with HIV had reached the point of no return. That day is gone, but by holding to AIDS we place a barrier that keeps us from moving away from trauma. So long as AIDS is around, people living with HIV will never be seen as “healthy,” because of the confusion between the two.
It is true that many people are still suffering from HIV-related complications and that death can still occur as a result. But the advanced stages of HIV is not the same thing as the finality that the term “AIDS” can evoke. We can still fight HIV. We can teach others that a person can be healthy with HIV. And we can let AIDS finally reside in the past and honor those who didn’t make it by moving on.
Moving on. It’s a hard thing to say to someone who has lost so many of their friends and loved ones to HIV and who has suffered from unbearable hate and stigma. But to honor the darkness, we must look to the light. And for long-term AIDS survivors who can’t seem to see it, we must learn to show them the way gently, respectfully, and with an empathetic heart.
Just like our CD4 counts have done, it is time to all of us, from the newly diagnosed to the long-term survivors, to move away from “AIDS” and into a new place that allows us to finally heal.
AIDS divides. It is a way to separate a population who has already seen so much isolation and pain. Frankly, we don't need it anymore and it is possible to keep the legacy of those we lost alive while putting AIDS down for good.
You can never learn to be the person you were before AIDS, or even before HIV, but maybe you can find the person who you want to become after it.