Take a deep breath—there’s a lot to learn (and unlearn).
A lot of the country’s COVID-19 response was modeled and informed by the mishandling of the HIV epidemic in the 1980s. Misinformation festered, rumors spread, and myths fueled fear and hate. New diseases often create panic, but HIV was particularly stigmatized since it appeared to affect mostly gay men. Today, while the understanding of HIV has improved, some HIV stereotypes still exist.
A History of HIV Stigma
Among certain groups in the United States, there’s a belief that homosexuality is a sin. Some even believe that HIV was a plague of “God’s will” to punish those who were “choosing” this lifestyle. This had major effects. It increased discrimination against gay men, and made some politicians back away from taking a stance or providing help. It also resulted in HIV stereotypes that only gay men could get this disease.
“Infections don't discriminate based on our preconceived notions of who should have it or who shouldn't have it,” says Stella Safo, MD, HIV internist at the Mount Sinai Icahn School of Medicine. Dr. Safo believes that stigma against HIV is one of the biggest barriers to treating HIV.
Eventually, women and people who used intravenous drugs were also getting sick from the virus, no matter their sexuality. Again, some people viewed this as punishment for promiscuity or immorality.
Due to a lack of research (which directly resulted from the stigma), HIV essentially was a death sentence for nearly a decade. People thought you could contract HIV by non-sexual touch, as though it is an airborne illness. Sadly, many people treated those suspected of having HIV like lepers.
This stigma kept people from getting tested for HIV for fear of knowing their status. People who had HIV were often afraid to take their medications because they didn’t want others to see. Many also felt hopeless for a cure or longer, healthy life, and didn’t see the point in trying.
Debunking HIV Stereotypes
Today, there is much more research and acceptance among the medical community for helping people who live with HIV. HIV stereotypes are also less prevalent among the general population.
Representation in the media has allowed the general public to step into the shoes of characters they might not otherwise relate to. You can see that in movies like Philadelphia, plays like A Normal Heart and Rent, and even current TV shows, like the recently wrapped Pose.
Prominent public figures like Magic Johnson, Rock Hudson, and Arthur Ashe also made a big impact when they came out as having HIV. These stories debunked HIV stereotypes because they showed that not all cases involved transmission from men having sex with men or illegal drug use. It could also happen from blood transfusions in hospitals. In other words, viruses can affect anyone.
Correcting Misinformation and HIV Stereotypes
“We're actually all less safe if people who may have HIV don't get tested, and then don't take medications, so we can think of HIV the way that we think of many other chronic illnesses,” says Dr. Safo. “[It] doesn't matter how they got it. They have a chronic condition, they need medication for it, and that's just what it is.”
Thanks to the medications available today, people who are HIV positive are not sick with HIV—they are living with it. Fighting HIV stereotypes helps everyone. It improves mental health for people who live with HIV, encourages testing and treatment, and reduces transmission to others. When people don’t know their HIV status, they can potentially spread it to others.
When talking to people who perpetuate stigma or believe stereotypes, it may help to:
- Call it out and correct it. Make sure others know that anyone can get HIV, how they can get it, and the advances in treatment that helps people live relatively normal lives.
- Talk openly about HIV. Sometimes, meeting real people with HIV can help others get over their fears. Your existence and how you thrive challenge their stereotype.
- Refer them to credible websites where they can do more learning on their own.
But It’s Not All On You
Don’t feel pressured to correct every person you talk to. Constantly being in “activist mode” can be emotionally draining. It’s not your responsibility to educate everyone you meet, especially if the other person becomes aggressive or violent. Assess who in your life has come to deserve your truth, patience, and compassion. If there’s someone in your life who needs to learn but makes you feel unsafe, simply send them links to the research and move on.
Talk to a doctor, mental health professional, or HIV support group about overcoming HIV stigma with your loved ones and acquaintances alike. Watch out for your mental health and self-esteem, and get help if you experience depression or suicidal ideation. You deserve to live a long, healthy, loving life free of judgment for your chronic condition.
Stella A. Safo, MD, is an HIV primary care physician and assistant professor of Medicine at the Icahn School of Medicine at Mount Sinai Hospital.
- What is HIV Stigma? Washington, DC: Centers for Disease Control and Prevention, 2021. (Accessed on July 14, 2021)
- Mental Health and HIV: Entire Lesson. Washington, DC: U.S. Department of Veterans Affairs. (Accessed on July 14, 2021)
- Let’s Stop HIV Together. Washington, DC: Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, 2021. (Accessed on July 14, 2021)