Talking openly about HIV can help increase awareness and understanding — but it’s important to be mindful of the words we use. Learn how to choose words wisely to fight HIV stigma and support people affected by it.
HIV stigma involves negative attitudes and ideas about people with HIV. It’s a type of prejudice that can lead to discrimination against people with HIV and those who have greater chance of contracting HIV. People may also internalize this stigma and, as a result, may develop negative feelings and ideas about themselves.
HIV stigma can negatively affect both physical and mental health. It may contribute to feelings of fear or shame that may stop some people from getting HIV testing or treatment. It can also have negative effects on personal relationships and economic opportunities, such as job access.
Certain words or terms may have
It’s important to choose language that is supportive and destigmatizing to create communities that are safe for people with HIV.
Read on to learn why words matter and how to choose your words wisely.
The medical community’s knowledge of HIV and the words used to describe it have changed over the past 40 years and will continue to change in the future. Learn about some of the key shifts below.
Early days of the HIV epidemic
The Centers for Disease Control and Prevention (CDC) reported the first cases of HIV-related complications in 1981, among five young gay men in Los Angeles.
All five men had rare infections, which were a sign of immune system damage. Scientists had not yet identified HIV as the cause of that damage.
People began to use the term “gay-related immune deficiency (GRID)” to describe this syndrome. This term inherently linked the syndrome to homosexuality. It sent the harmful and inaccurate message that being gay caused the syndrome and that only gay people could develop it — neither of which has ever been true.
The CDC began to use the term “acquired immunodeficiency syndrome (AIDS)” in 1982.
Homophobic assumptions and attitudes continued to affect the way doctors, politicians, and the wider society responded to communities affected by AIDS.
People with AIDS began to mobilize almost immediately to advocate for change.
The move to person-first language
HIV activists wrote the Denver Principles in 1983 to affirm the rights, dignity, and autonomy of people with AIDS. These principles emphasize the importance of treating people with AIDS as whole people and not defining them by their diagnosis or health needs.
Along with other changes, these principles call for
The phrase “person with HIV” is an example of person-first language. It positions the person before HIV. It describes someone as having HIV, without prioritizing their diagnosis.
The phrases “HIV-positive person” and “HIV-infected person” are not person-first. They put HIV before the person, as a defining feature of who that person is.
Organizations such as UNAIDS, the International AIDS Society, and the
Distinguishing between HIV and AIDS
Many people and organizations have historically used the terms “HIV” and “AIDS” interchangeably or grouped them together in the phrase “HIV/AIDS.”
HIV advocates have called for people to recognize the difference between these terms. It’s more accurate to use either “HIV” or “AIDS,” depending on which specific condition you’re talking about.
HIV is a virus that attacks cells in the immune system. Without treatment, it can cause severe damage and stop the immune system from fighting off infections.
AIDS is a syndrome, or a range of conditions that may develop when HIV weakens a person’s immune system. These conditions include opportunistic infections and certain types of cancer that can cause life-threatening illness.
Highly active antiretroviral therapies (ART) are now available to treat HIV. These treatments lower the amount of virus in the blood and reduce a person’s risk of developing stage 3 HIV, which is an updated term for AIDS.
Most people with HIV who receive early, effective ART treatment never develop AIDS.
ART can help prevent life-threatening illness in people who do develop AIDS.
Reconsidering the language of ‘infection’
It’s important to consider the denotations and connotations of the words we use.
Denotations are the literal definitions of words, as described in a dictionary. Connotations are the cultural meanings or implications that are associated with words.
Consider the word “infection.” An infection happens when a virus, bacteria, or another pathogen enters a person’s body. This is the literal definition of the word.
Infections also have cultural meanings and stereotypes linked to them. Historically, people with infections such as HIV have often been labeled dirty, tainted, or immoral. This has contributed to HIV stigma and discrimination.
Sometimes it may be necessary to talk about HIV as an infection, such as in medical discussions of how the pathogen behaves in the body.
At other times, it’s possible and preferable to avoid talking about HIV in terms of infection. Describing people with HIV as “infectious” or “infected” is stigmatizing.
Talking about how people “acquire HIV” or strategies to “prevent transmission” may convey the same information with fewer negative connotations and less stigma.
It’s also important to recognize the availability of treatment to prevent HIV transmission.
Treatment with ART can reduce HIV in the blood to an undetectable level. People with HIV who have an undetectable viral load have effectively no risk of transmitting HIV.
Treatment with preexposure prophylaxis (PrEP) or postexposure prophylaxis (PEP) can help prevent people from contracting HIV.
Adapting to change
The most accurate and widely preferred terms to discuss HIV may change in the future. Health knowledge, cultural norms, and language all shift over time.
Learning about changes in HIV knowledge and language can help people limit the spread of misinformation and stigma. This is important for building communities that are safe and welcoming for people with HIV and those at risk of contracting it.
It’s also important to respect the right of each person with HIV to describe their experience in their own terms. People may use different terms or respond to certain terms in different ways. Words that feel familiar or empowering to one person might not feel right to another.
Consider avoiding the stigmatizing terms below and using the alternatives recommended by the NIAID and the
| Stigmatizing terms to avoid | Preferred alternatives to use |
|---|---|
| HIV-positive person HIV-infected person AIDS-infected person HIV/AIDS patient HIV/AIDS carrier HIV/AIDS victim HIV/AIDS sufferer HIVer | person with HIV person living with HIV person with a diagnosis of HIV |
| at-risk person/population high-risk person/population | Person/people … exposed to HIV with certain risk factors for HIV with greater chance of getting HIV who engage in some behaviors that increase the chance of getting HIV Population/community … with high incidence of HIV with high prevalence of HIV disproportionately affected by HIV overrepresented in the HIV epidemic |
| HIV/AIDS | To describe the virus: HIV To describe the syndrome: AIDS To describe both: HIV and AIDS |
| catch HIV catch AIDS | acquire HIV receive a diagnosis of HIV |
| pass on HIV pass on AIDS spread HIV spread AIDS | transmit HIV |
| die of AIDS | die from complications related to HIV die of an AIDS-related illness |
| unsafe sex unprotected sex | sex without a condom or medication to prevent or treat HIV |
| injection drug user | person who injects drugs |
| mother-to-child transmission | perinatal transmission |
People affected by HIV can experience stigma and discrimination, which can negatively affect their physical, mental, and social well-being.
Certain words and terms have negative meanings or associations that may contribute to HIV stigma. Avoiding those terms and using less stigmatizing words instead may help create safe and welcoming communities for people with HIV.
HIV advocates have called for person-first language, which puts the individual’s personhood before their diagnosis or condition. For example, “person with HIV” is generally preferred over “HIV-positive person” or “HIV-infected person.”
Distinguishing between HIV and AIDS is also important to ensure that we talk about the virus and the syndrome in accurate and destigmatizing ways. Early and effective treatment for HIV can help limit immune system damage and prevent AIDS.
Although HIV is an infection that can be transmitted between people, talking about people with HIV as “infected” or “infectious” can be harmful. Negative stereotypes about people with HIV can contribute to stigma and discrimination.
Talking about the ways that “people acquire HIV” or the specific “risk factors for transmission” conveys information about HIV in less stigmatizing terms. People can take certain steps to avoid acquiring or transmitting HIV.
Our understanding of HIV and the ways we talk about it will continue to change over time. Learning about changes in knowledge and preferred language is one thing you can do to fight HIV stigma and show respect and support for people affected by HIV.