As an HIV Survivor, COVID-19 Stigma Is Sadly Familiar

This article was originally published on NextAvenue.org, as part of its Still Here, Still Positive series on the first generation of Americans aging with HIV/AIDS, with support from The John A. Hartford Foundation. Next Avenue an organization focused on “meeting the needs and unleashing the potential of older Americans through media.”

Elizabeth Martucci figured it made perfect sense to share the exciting news that she and her 11-year-old son had recovered from COVID-19. The New Jersey resident even had “COVID-19 Survivor” T-shirts made.

Martucci didn’t anticipate the response she’d get to being a survivor — and the sometimes jarring lengths to which some will go because of their fear. As The New York Times reported in a story about Martucci, “Even now, a month into their recovery, some neighbors see them and run.”

“Federal health experts and epidemiologists agree that patients fully recovered from COVID-19 no longer pose risk of infection to others,” said The Times article. “Yet some people who have survived the illness are still confronting a fear-driven stigma from the outside world.”

A Familiar Stigma

An online search for “COVID-19 stigma” yields a raft of stories from across the world about the fear-driven shunning and outright persecution facing people with, or recovered from, the illness. The Times’ story shares anecdotes of a veterinarian who refused to treat a recovered woman’s dog and a laundromat worker who “jumped at seeing an elected official whose illness had been reported on the local news.”

The Japan Times reports that in sub-Saharan Africa, for example, “landlords evict people from their homes, nurses are abandoned by their husbands, and people are spurned just on suspicion of coming into contact with a COVID-19 patient.”

This kind of extreme stigma is all too familiar to those of us who lived through the early years of the HIV/AIDS pandemic in the 1980s. Far too many people with the virus were evicted from their homes, shunned by their families, denied proper funeral services, and dehumanized as moral degenerates who “brought it on themselves.”

As I looked back across my life to write my book Stonewall Strong, I thought a lot about HIV and what it means to me. I had never seen it as a moral issue, but as simply a virus whose only “meaning” was that there are dangerous things floating around this world of ours.

After my own 2005 diagnosis, I had to get to the point of understanding that living with HIV doesn’t “mean” I have a character defect or moral failing. It means I haven’t always made healthy choices in my sexual behavior. It means that my life’s traumas sometimes have affected me and undermined my good judgment. It means I am human.

As a person living with HIV, it’s my responsibility to take care of my health — taking my medication as prescribed to maintain viral suppression. This means better health for me and that I can’t infect anyone else.

But I can’t change someone else’s perceptions or educate them with fact-based information unless they are receptive to it.

I have bumped up against others’ stigmatizing attitudes, particularly in the dating arena. Even after nearly 40 years of the HIV pandemic, the personal profiles of gay men in online dating sites abound with terms like “clean” and “DDF” (drug- and disease-free) to signal that anyone with HIV — including those with “undetectable” virus who pose zero risk — is not likely to be welcome.

Celebrating Survival

With this kind of us-vs-them attitude even in the hardest-hit gay male community, it’s not surprising to know that stigma is one of the biggest obstacles to ending the HIV/AIDS epidemic.

“Stigma, homophobia, and discrimination affect the health and well-being of gay and bisexual men and may prevent them from seeking and receiving high-quality health services, including HIV testing, treatment and other prevention services,” notes the Centers for Disease Control and Prevention (CDC). “These issues place gay and bisexual men at higher risk for HIV.”

Likewise for COVID-19.

If survivors have to worry about being shunned, rather than celebrated, then where is the incentive for others to be tested in the first place? What happens when people are so irrationally terrified that they don’t trust the ability of recommended safety precautions to protect them?

We can only choose for ourselves how we think about HIV or COVID-19 and what it “means” for us. Personally, if someone shuns, or runs away, from me because I am open about having — or having had — HIV, I am not likely to feel badly about being “rejected.” Instead I will pity them because they are driven by fear, not rational thought.

After seeing HIV ravage the bodies and minds of too many of my friends in the years before we had the medications I take each day to keep it under control, I feel profound gratitude to be alive and healthy. Like Martucci and her son, I celebrate my survival because I’ve known so many who didn’t survive.

After you’ve had the experience of confronting your own vulnerability, and mortality, it’s hard to care for too long what others think about you. Even if they literally run away, you will have the satisfaction of knowing the resilient stuff you are made of, and it will help you face every other challenge life throws your way.

John-Manuel Andriote has reported on HIV/AIDS as a journalist since 1986. He has been open about his own 2005 HIV diagnosis since coming out publicly about it in a first-person story for The Washington Post. Andriote’s most recent book is Stonewall Strong: Gay Men’s Heroic Fight for Resilience, Good Health, and a Strong Community, a bookend for his award-winning history Victory Deferred: How AIDS Changed Gay Life in America. Andriote mines his and other gay men’s experiences for insights on resilience in conference and university talks and in his Stonewall Strong blog for Psychology Today.