What's in a Name?

Words matter in how we label ourselves.

Posted Nov 05, 2018

“My name is John and I am an HIV patient.”

You aren’t likely ever to hear me say that. In fact, I recently resisted saying exactly that when I was asked to identify myself with these words for an educational video about a medication I take.

I explained why I resisted. It's simple:  I don’t define myself by my HIV diagnosis. As I often say, HIV is something I have; it’s not who I am. It is certainly not all that I am.

Like you, I have many identities—among them, a writer, son, fellow alumnus, hiker, and New Englander. To reduce ourselves to any one of them would deny the rest of them, and render us a two-dimensional cutout.

Likewise, I am only an “HIV patient” in relation to my physician or, more broadly, the health care system. The insurance companies require my doctor to check boxes on my office visit summaries, ticking off the code for HIV and the other codes that correspond to my medical issues. But I don’t check boxes or tick off codes as I go about my day-to-day life.

I don’t wake up in the morning and think, first thing, “Yup, I still have HIV today.” Or, “I’m still gay.” I certainly do have HIV, and I am still gay. But I also wake up with brown eyes and a bald head—yet those traits alone do not define me as I see myself. They are not all there is to know about me.

If you insist on a label, I’m a person living with HIV—the preferred current term for someone who has what I do, with the emphasis on "person."

John-Manuel Andriote/photo
Like a tree's roots, all our identities fuse together to make us who we are.
Source: John-Manuel Andriote/photo

I take my cues on this subject from the very first gay men ever to be diagnosed with AIDS—the final [highly preventable] stage of untreated HIV disease—and to go public about having it. These men were amazingly courageous to speak openly about living with a deadly illness at a time when information about it was limited, and hysteria was rampant.

As open and proud gay men, they understood that words matter. They knew that letting themselves be cast in the role of victim or patient would steal their dignity and undermine their agency. Instead of passively accepting the designation of “AIDS patient” or “AIDS victim,” these men insisted on being called “people with AIDS,” or PWAs. They identified themselves foremost as people, as human beings. Their humanity, not their medical diagnosis, would define them.

Being HIV-negative was one of my identities for nearly 20 years, from the time of my first negative HIV test, in 1988, until my positive test in 2005. Even as so many of my friends became sick and died from HIV-related complications, I was able to reassure myself that I would remain HIV-negative. Until, that is, my doctor’s phone call on October 27, 2005, telling me I had tested positive.

It was the single biggest trauma of my life, upsetting everything I knew or believed about myself, my sexuality, my health, and my future. I had to begin taking medication right away because my immune system was already quite damaged. I'd had no warning signs. None.

Besides tending to my medical needs, I also had to face the existential reality of now living with the very same virus that had killed so many people I knew and caused me, and all of humanity, so much sorrow. How would I now tell my story—after 20 years by then of telling other people’s stories as a reporter?

Having written in my book Victory Deferred about men like Bobbi Campbell, the San Francisco nurse who was the first person ever to speak publicly about his AIDS diagnosis, I knew I wanted my own story also to be one of courage and resilience.

I also knew that, like Bobbi Campbell, I wanted to be open about my new HIV status. I never bought into the stigma so many still attach to HIV. I understand the virus merely to be one of the multitudes of physical dangers we humans can face in the course of being human. I wasn’t about to internalize that stigma. Like all gay men, I had already wrestled with far too many inner bullies telling me something was wrong with me.

That’s why I did what I like to joke “any self-respecting AIDS reporter would do”: I came out publicly about having HIV in a first-person story for The Washington Post and in an NPR interview.

I chose—still choose—to tell my own story—rather than leave it to someone else to tell a story about me. Being a journalist, a professional storyteller, I also choose to tell my story in a way that others find it harder to “otherize.”

I want you to picture yourself in my shoes because I am here to tell you: “Their” stories can become your own story as quickly, completely, and unexpectedly as a phone call from your doctor. This I know, too well.

So instead of saying, “My name is John and I’m an HIV patient,” how about if I simply say, “My name is John.”