This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.
“This is so 1980s,” I told my doctor in 2005, after finding out that I could have been HIV+ for three years already—all without any warning signs whatsoever.
I said this because, to my mind, what happened to me was so much like what happened to thousands of people in the 1980s: they learned they had HIV only after being rushed to the hospital with potentially fatal pneumonia, or some other opportunistic infection that runs rampant when the immune system is seriously compromised.
My doctor assured me that medical treatment for HIV infection was far advanced from the “dark years” of the 1980s and early 1990s. The first effective treatment for HIV didn’t arrive until 1996, but now, a combination of therapies involving antiretroviral drugs make it possible to live with HIV rather than almost inevitably progress to AIDS and die.
I knew all of this—intellectually, anyway—because by the time of my own diagnosis, I had been reporting on HIV-AIDS for two decades as a health/medical journalist in Washington, D.C. But it’s one thing to report on other people’s illnesses, and another thing entirely to live with HIV one’s self. Now I had to relearn the basics of HIV, like what a healthy T-cell count is (600-1,200), when my own health, and my own life, was on the line.
It’s one thing to report on other people’s illnesses, and another thing entirely to live with HIV one’s self.
An Unexpected Blood Test
I learned about being HIV-positive as part of the blood work for my annual physical exam. I had believed I was being tested for HIV every year since 1988, but it turned out my doctor had skipped the test for the past three years. I hasten to point out that he didn’t do the test based on our discussion about my sexual behavior; neither of us considered it ‘high-risk.’ I could have been infected at any point during that time.
I had to remind myself that the only thing that actually changed after my diagnosis was that now I knew what I was dealing with. Even before my doctor’s phone call, I was already HIV-positive; I simply didn’t know it.
Despite what they say, ignorance is not bliss. When it comes to HIV, what you don’t know can most assuredly harm you.
Despite what they say, ignorance is not bliss. When it comes to HIV, what you don’t know can most assuredly harm you: for example, if you don’t know you have HIV, you can’t undertake the regimen of drugs that can prevent it from escalating to full-blown AIDS. So knowing your HIV status is an essential first step in asserting power over your health. Because believe it or not, HIV doesn’t define you.
More Than Just HIV
I offer myself as “Exhibit A” where it comes to living well with HIV. Although I speak and write publicly using my real name about my experience of living with the virus, HIV isn’t what makes me who I am. As I like to say, I have HIV; I am John.
It’s been challenging at times, when others choose to see my HIV-positive status before they see John. It’s always jarring, for example, when someone who doesn’t know me well asks, “How is your health?” Even worse is when another gay man simply dismisses me and other HIV-positive gay men as “unclean,” unrealistically certain of his own HIV-negative status, which could be months or even years out of date.
I can’t stop someone from seeing me only through the lens of HIV. But I can live my life as a man who embraces all of my identities.
But I’ve also chosen not to allow the stigma such people still attach to HIV to undermine my self-esteem. I can’t stop someone from seeing me only through the lens of HIV. But I can live my life as a man who embraces all of my identities—including “person living with HIV”—without reducing myself to any one of them. Living with HIV doesn’t change the fact that I am still a New Englander, a journalist, or someone who loves to cook, garden, hike, and follow politics. They are all part of what makes me the man I know.
That kind of integration and wholeness begins with the power of knowledge. Not knowing your HIV status robs you of agency and power over your own health. Buying into others’ stigma if you have the virus lets others define you on their terms, and that is not something I care to do.
Know Your Status…
This is why “Know Your Status” is the theme of this year’s World AIDS Day, to be marked on Saturday, December 1. For the 30th year, World AIDS Day will honor all of us living with HIV, and memorialize those killed by the virus.
Worldwide, UNAIDS estimates that as of 2017, 36.9 million people were living with HIV, while another 1.8 million were newly infected that year. Of those living with the virus, only 21.7 million are taking the antiretroviral medication that effectively prevents HIV infection from progressing to late-stage AIDS. Nearly 36 million women, men, and children have died from AIDS-related causes since the illness was first identified in 1981.
In the United States, the Centers for Disease Control and Prevention (CDC) reports that an estimated 1.1 million people were living with HIV as of the end of 2015, the latest year for which figures are available. In 2016, there were 39,782 new HIV diagnoses nationwide. The CDC estimates that 15 percent of people who are infected with HIV don’t know they have the virus. Their health is at risk for serious illness, and their sexual and drug-sharing partners are at risk of being infected.
Because Knowledge Is Power
I was one of those people. I hadn’t a clue HIV was already undermining my immune system. I had no warning, no night sweats, swollen lymph glands—nothing. If I hadn’t gotten an HIV test as part of my annual checkup in 2005, I likely wouldn’t have found out I had it until I faced a serious health crisis as my immune system deteriorated.
Once I found out what I was dealing with, I was able to make smart, informed choices to care for my physical and mental health. This is why, 13 years after my diagnosis, I can still say: If I didn’t know I have HIV, I wouldn’t know.
Know your status because knowledge is power.
Creative Commons photo by Antti T. Nissinen.