HIV stigma comes in many forms, and it can originate from those closest to you. If you are someone living with HIV — and especially if you are a member of Black, Latino, and/or LGBTQ+ communities — stigma and discrimination can prevent you from using health resources such as testing and HIV treatment. As one myHIVteam member said, “There will always be stigma from having HIV/AIDS. The general population feels that they are immune to this virus and therefore choose to ignore it until it hits close to home.”

Ending HIV stigma is a massive task, but there are steps you and your loved ones can take to help reduce the burden of HIV stigma in your community.

1. Know Your Status

About 1 in 8 people who have HIV in the U.S. don’t know their HIV status. From both a personal and public health perspective, getting tested and diagnosed is a crucial step to overcoming HIV stigma. Some people believe that only people in “high-risk groups” should get tested for HIV. However, HIV.gov recommends that everyone between the ages of 13 to 64 should get tested for HIV at least once in their life.

Everyone between the ages of 13 to 64 should get tested for HIV, not just those in “high-risk groups.”

You should be tested for HIV more frequently in the following situations:

• If you are sexually active with more than one partner or with a new partner, get tested more regularly and encourage your partner to get tested as well. Even if both you and your partner are having sex only with each other, you should both find out your HIV status.
• If you use intravenous drugs (even if you’re making sure to use clean needles and other supplies), it is important to get tested for HIV and other sexually transmitted infections as frequently as possible. The Centers for Disease Control and Prevention (CDC) recommends people who inject drugs get tested at least once per year.

Check out your local or state Department of Health website to find out how you can get tested for free, or in a way that is covered by your insurance. Options include annual city health fairs, mobile HIV testing vans, employee or student health services, public health offices, and primary care doctor appointments. If you do get a positive test result, you will be referred immediately to an HIV doctor to get started on antiretroviral therapy (ART).

It can be scary to get tested for HIV, especially if you fear HIV stigma from health care providers or your family, partners, and friends. However, there are free and confidential ways to learn your status. Knowing your HIV status is one of the greatest tools you have to live a healthy life and help others do the same.

2. Get the Facts

Knowledge is power when it comes to reducing HIV stigma. Here are some facts to have up your sleeve about HIV transmission and treatment.

Facts About HIV Transmission

• HIV cannot be transmitted through saliva (kissing, sharing a straw), skin-to-skin contact, sneezing, or coughing.
• HIV can be transmitted through anal or vaginal sex, needlesticks, shared intravenous drug equipment, breast milk, and vaginal birth.
• Because of rigorous testing of the U.S. blood supply, it’s very unlikely anyone would get HIV from blood transfusions or organ and tissue transplants.

Facts About HIV Prevention

• Preexposure prophylaxis (PrEP) is a daily pill or bimonthly injection you can take to prevent getting HIV. It is a safe and effective method of HIV prevention for both men and women, and it may be especially beneficial for those with multiple sexual partners, people who use injected drugs, or those who have a partner living with HIV.
• PrEP is only effective at preventing HIV and not other STIs. It’s still recommended you use a condom when having sex on PrEP.
• Postexposure prophylaxis for HIV (PEP) is medicine you take after a possible exposure to HIV. These can be prescribed through emergency departments or at retail pharmacies in some states.

Facts About HIV Treatment

• ART treats HIV by slowing the effects of the virus on the immune system, and it can prevent the spread of HIV to others. Although ART cannot cure HIV, people who take ART every day can live symptom-free, healthy lives.
• Undetectable = untransmittable: Having an undetectable viral load (so few virus copies they can’t be seen on a test) for several months means you cannot sexually transmit the virus to anyone else. Staying on ART can help you become undetectable.

Being empowered with the facts can help you correct misinformed statements about HIV.

3. Use Inclusive Language

So often, words are used as a weapon against people with HIV. When talking about HIV and people living with HIV, it is essential to use language that is accurate, unbiased, and people-focused. Here are some quick ideas to make sure you and the people around you are using helpful terminology.

• Don’t say “AIDS” (the syndrome caused by late-stage HIV infection) when talking about HIV infection. AIDS cannot be transmitted from one person to another — it is a collection of symptoms someone experiences when they are very sick with HIV.
• Instead of saying things like “catch HIV” or “pass on HIV,” use medical terminology such as “diagnosed with HIV” or “transmit HIV.” This language is more specific and less biased.
• Be more specific than saying “bodily fluids” can transmit HIV, because only some of them can. Refer to the specific route of transmission, such as blood, amniotic fluid, semen, vaginal fluids, or breast milk.
• Instead of saying “victims,” “sufferers,” or “patients” of HIV or AIDS, use people-centered language. ”People living with HIV” is a good choice.
• Instead of saying “drug users” or “drug addicts,” try “people who inject drugs” or “people with a history of injected drug use.” This wording separates people’s actions from their identities.

Using people-centered, factual, medical language — and correcting others who use the wrong terminology — can be a powerful tool in reducing HIV stigma in everyday conversations.

4. Recognize Internalized Stigma

Much of the stigma that people living with HIV experience comes from within. Internalized stigma, also called self-stigma, happens when a person applies negative beliefs and stereotypes about HIV to their own life.

Even before someone is diagnosed with HIV, internalized stigma can prevent them from choosing to get tested in the first place. Self-stigma also prevents many people around the world without HIV from taking PrEP. Recognizing that you may have internalized stigma is the first step to overcoming it.

If you have some internalized stigma about your HIV status, you may find yourself speaking negatively about yourself, having low self-esteem, feeling shame, wanting to be isolated, or fearing telling your loved ones about your HIV status. These thoughts are common, especially soon after diagnosis. However, it is possible to change your beliefs over time, especially with the support of others.

One myHIVteam member shared this uplifting story: “I’ve (hopefully) worked through my issues around stigma, and very rarely do I even think about it. The current person I’m dating is negative, and when I told him, he just said something like ‘Oh, that’s no big deal, I’m educated.’ Times are changing for the better!”

5. Use Your Voice

Whether or not you have experienced HIV stigma personally, you can take meaningful and practical actions to end HIV stigma.

If you’re living with HIV, the priority is protecting your safety and confidentiality — if you wish to keep your status private. One myHIVteam member shared that they regretted disclosing their status to some family members: “I am very selective about whom I choose to disclose my status. Many people are not knowledgeable, and stigma/discrimination remains a challenge.”

At the same time, many people are living openly with HIV and using their experience as a platform to reduce HIV stigma for others, increase awareness about the HIV epidemic, and encourage everyone to get tested to know their status. HIV is a lifelong diagnosis, so there is plenty of time to find your voice and decide if you’d like to get involved in advocacy work.

If you have a loved one living with HIV, use your voice to call out HIV stigma when you hear it. Educate yourself on HIV facts to be able to call out myths and misconceptions when they come up. Help to normalize HIV testing, PrEP, and ART. Identify racial and sexual identity inequities in access to these resources, and advocate for change.

Some ways to speak up for change outside of your everyday conversations include posting advocacy messages on social media, attending protests and signing petitions, and calling legislators to protect health care access for people living with HIV. Even sharing your story on myHIVteam can help those who have been newly diagnosed realize that people with HIV can have long, healthy lives.

If you have a loved one living with HIV, use your voice to call out HIV stigma, myths, and misconceptions when you hear them.

Talk With Others Who Understand

On myHIVteam, the social network for people with HIV and their loved ones, more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand life with HIV.

Have you or a loved one experienced HIV stigma? What steps have you taken to help end HIV stigma in your community? Share your experience in the comments below, or start a conversation by posting on your Activities page.