Don’t Cry for Me: Resisting the Narrative of Living with HIV as “Tragic”

Don’t Cry for Me
I’ve had challenges, yes—but I don’t define myself as a victim
by John Francis Leonard

Photo by Alina Oswald

I’ve had an eventful life—who hasn’t? Modern life is fraught with challenges, obstacles to overcome, pain to endure—I’ve had my fair share. What I’ve always tried to remember is that no matter how bad you think you have it, there is someone who’s had it worse. But pain isn’t a contest—there’s no prize after a long life of it other than that you’ve survived and managed to keep your humanity, your love for the world, and your fellow man intact.

For those of us living with HIV, there are particular, additionally cumbersome, burdens to bear. We feel so much progress has been made and then read of a Georgia state legislator, in session, openly inquiring about quarantining the HIV-positive. This is from an actual, highly-trained physician reveling in ignorance and fear. That brings us to the very real stigma and shame that is still projected onto us by society, even our peers. Who among us hasn’t divulged our status only to be rejected both emotionally and sexually? There are also the very real obstacles we face in keeping healthy and obtaining the health care we deserve and need. Then, after many of us bought into the idea that the antiretrovirals would simply, without further difficulty, allow us long and healthy lifespans, we were facing down the ancillary health complications and illnesses that come with taking these medications, as well as being immunosuppressed, in the long term. Yes, we’re alive, but there is still a cost to be paid. It’s tough at times to just keep ourselves and our self-esteem intact.

It occurred to me with last year’s column about the death of a young lover of mine that I’ve written my fair share of pieces for this magazine that can be, to put it bluntly, called “tragic.” I enjoy writing about the painful episodes of my life—I find it cathartic. And, of course I want to bring the reader my own struggles with HIV itself. It’s part of what we do as advocates and activists, share our stories. For so long the predominant narrative that we read and watched had been one of tragedy when it comes to HIV and AIDS. I dread telling the average straight person outside of the world of advocacy and activism that I’m positive; I avoid it like the plague. There’s judgment to fear, of course, but what I dread more than anything is pity. Their eyes, soft yet glazed-over, look at you as they nod sympathetically as if you might die at any minute—as if you had one foot planted in front of them and another in an early grave.

It’s important that we tell our stories, that we share our history—the good, the bad, and the ugly. The general public and especially our youth might assume that the fight is behind us. It is not. New HIV infections are growing at a rapid rate in some of our communities—the numbers among black and Latino MSM alone are startling. Recently, an acclaimed Broadway composer, Michael Friedman, lost his life to AIDS-related causes because of delayed testing and treatment. According to the CDC one in eight people is infected and doesn’t know it. Many people do know it and either don’t seek treatment or simply lack access to proper treatment. I wrote two columns in the past about a young man I know who was diagnosed positive when his healthcare provider suggested an HIV test. He didn’t follow through with treatment then and well over a year later, he still hasn’t. The stories of what we’ve lost to AIDS can serve as a warning. Our stories of living with HIV can break down the barriers of stigma and shame and lead to more people in treatment. After all, as we know now, treatment is one of our most powerful weapons against transmission in the fight against HIV.

So I ask myself, what can I do a little differently? What difference can I make in the fight against HIV/AIDS? I’ll continue to write about my struggles as I live with HIV. I never want young people to be less cautious and think that “I’ll just take meds if I get it.” Those of us living with this disease, especially those of us aging with it, know it’s not that simple. What I really wanted to make sure that I conveyed in this piece was that I’m all right. I’ve come through a lot of challenges in my life, and am still dealing with some, but I’m happy. I look forward to what’s to come eagerly, and most importantly, with open eyes. Things aren’t perfect—at forty-eight I still have opportunities for growth and change, but I know now that it’s all in my hands. I can’t change everything that lies ahead in the future but I can determine how I will deal with both reward and struggle. This I can do for myself and luckily, through the medium of writing, I can help others do. There’s no greater satisfaction for me.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal. Follow him on Twitter @JohnFrancisleo2.