Advertisement
The Body: The Complete HIV/AIDS Resource Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App 
Professionals >> Visit The Body PROThe Body en Espanol

Information

Why Language Matters: Facing HIV Stigma in Our Own Words

October 31, 2017

 1  |  2  |  Next > 

A special thanks to Community Advisory Board member, Vickie Lynn, for her significant contribution to the development of this fact sheet. 

Table of Contents


Introduction

If we spoke a different language, we would perceive a somewhat different world.

-- Ludwig Wittgenstein

  • Have you ever heard a person living with HIV describe themselves as "I am HIV"?
  • Do the words "infection" or "infected" feel negative to you?
  • Are you offended when you are referred to by your health condition first, instead of as a person first?

The words people use to talk about HIV affect the way people living with HIV feel about themselves. These words also have an impact on how others perceive people living with HIV.


Words, Language and Perception

Words help shape our understanding of the world we live in. They define our experiences and are the foundation of our stories. Words and language describe who we are and how we connect with the world around us, and with ourselves.

Most of us have had one of those days when everything is going well and someone says a single word that changes everything. That one word does something to us, deep inside; we feel it in our gut, in our heart, and in our soul. In a heartbeat, that one word builds us up or tears us down. Words can inspire, empower, and bring us hope. But they can also bully and scare and destroy our sense of self.


Advertisement

Why Language Matters

Throughout their lives, women may experience multiple forms of oppression and discrimination based on gender, race, sexual identity, socioeconomic status, or other factors. This oppression and discrimination is often reinforced through language. For instance, an aggressive, powerful woman is called a "bitch," while a man with the same qualities is viewed with respect and called "ambitious." Adding an HIV diagnosis can magnify this oppression and affect self-worth, confidence, and self-identity.

Over the years, repeatedly hearing language that reinforces stigma, oppression, and discrimination ultimately affects the health and well-being of women diagnosed with HIV. Stigma and stress have a negative effect on women's overall quality of life, which can affect her family, her children, her job, and even her pregnancies. It is rare to find a woman living with HIV who has not felt stigmatized in some way.

A 2005 study from the International Center for Research on Women found that consequences of HIV-related stigma include:

  • Loss of income
  • Loss of hope
  • Increased feelings of worthlessness
  • Increased internalized stigma
  • Poor care in the healthcare system, especially from professionals not in HIV care service delivery
  • Loss of reputation in the family and community

HIV-related stigma affects prevention, deters people from being tested for HIV, and makes disclosure more difficult. The stress that stigma causes can affect the immune system, increasing susceptibility to illness and disease.

Using inappropriate language to describe HIV and women increases the amount of stigma and stress women experience daily. Putting the label before the person, as in the phrase "HIV-infected woman" or "HIV-infected mother," dehumanizes women and turns them into a disease or illness. Instead, the preferred phrase is "woman living with HIV" -- referring to the person first, before mentioning their health condition.


What is HIV Stigma Communication?

The narrative (public story of connected events) about HIV includes myths and false stereotypes that stigmatize the disease and isolate people living with HIV. These include the stereotype that people living with HIV are more sexually active than others and the myth that having sex with a person living with HIV automatically means that they will acquire HIV (the truth is that there is no measurable risk at all of HIV transmission when the person with HIV is taking HIV drugs and has an undetectable viral load). But stigmatizing stereotypes make for good rumors and gossip; and the news media often uses them to attract attention to their stories. Research has shown that the emotions most often shared in rumors are fear, anger, or disgust. These rumors then become part of our social environment, regardless of whether they are true.

Certain medical conditions are stigmatized more often than others; some conditions are seen as moral issues or character flaws, instead of the biological diseases that they are. Examples include leprosy, mental health, substance use, and HIV. People with leprosy are called lepers; people with mental health conditions are called "the mentally ill"; people who use mind-altering substances are called addicts or junkies. Reducing people to a label dismisses their humanity and sets them apart from others.

Stigma communication is in the language, labels, and messages used to educate and talk about a disease, condition, or group of people. HIV stigma communication is found in the history of the HIV epidemic, in the media, in social marketing prevention campaigns, in policies, in the research literature, in movies, and in our own heads. The language we hear, whether it comes from family or friends, news headlines, or research articles, becomes the language we use to describe ourselves and the language we use to describe others.


"People-First Language" and the Denver Principles

One way to address stigma is to use people-first language. The Denver Principles was a document written by HIV advocates in 1983, in the very early days of the epidemic. In its opening words, the Denver Principles called for the use of respectful person-first language:

We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."

This narrative describes people living with HIV as human and valuable. It shows respect and compassion. People-first language puts the person before the illness or label and describes who they are, not what they have been diagnosed with. People-first language helps eliminate prejudice and removes value judgments. When we describe people by labels or medical diagnoses, we devalue and disrespect them as individuals. People-first language respects people for who they are.

Think about when you hear about someone who "has a cold" or "has epilepsy"; this clearly describes a person who has an illness. Saying, "we saw an epileptic today" or "we saw an HIV-positive person today" describes the person as the illness, rather than a person who happens to have the illness. We never hear "cancerous people" or "I am cancer positive"; but we often hear people say "HIV-positive women" or "HIV-positive pregnant women."

It is important to note that terms and phrases like "living with AIDS" and "I am HIV positive" have been extremely empowering to many people living with HIV, while for others, these terms may not describe their experience, or may feel stigmatizing. That is okay; words and language mean different things to different people and at different times in their lives. It is important to allow others to define themselves as they wish, but to always start from a place of respect.


Preferred Language About HIV

Over the years, as we have learned more about HIV treatment, care, and prevention, advocates have pushed HIV service organizations, media outlets, and other institutions to use language describing HIV that reflects those changes. Included in the left-hand column of the table below are some of the first terms ever used to talk about HIV. Little by little, the language we use is shifting toward the preferred terminology.


Stigmatizing Language
("Try not to use")
Preferred Language
("Use this instead")

HIV-infected person

Person living with HIV; PLHIV

Never use "infected" when referring to a person

HIV or AIDS patient, AIDS or HIV carrier

Positives or HIVers

Died of AIDS, to die of AIDS

Died of AIDS-related illness, AIDS-related complications, end-stage HIV

AIDS virus

HIV (AIDS is a diagnosis, not a virus; it cannot be transmitted)

Full-blown AIDS

There is no medical definition for this phrase; simply use the term AIDS, or Stage 3 HIV

HIV virus

This is redundant; simply use the term HIV

Zero new infections

Zero new HIV transmissions

HIV infections

HIV transmissions; diagnosed with HIV

HIV infected

Living with HIV or diagnosed with HIV

Number of infections

Number diagnosed with HIV; number of HIV acquisitions

Became infected

Contracted or acquired; diagnosed with

HIV-exposed infant

Infant exposed to HIV

Serodiscordant couple

Serodifferent, magnetic, or mixed-status couple

Mother-to-child transmission

Vertical transmission or perinatal transmission

Victim, innocent victim, sufferer, contaminated, infected

Person living with HIV; survivor; warrior

Never use the term "infected" when referring to a person

AIDS orphans

Children orphaned by loss of parents/guardians who died of AIDS-related complications

AIDS test

HIV test (AIDS is a diagnosis; there is no AIDS test)

To catch AIDS, to contract AIDS, transmit AIDS, to catch HIV

An AIDS diagnosis; developed AIDS; to contract HIV (AIDS is a diagnosis and cannot be passed from one person to the next)

Compliant

Adherent

Prostitute or prostitution

Sex worker; sale of sexual services; transactional sex

Promiscuous

This is a value judgment and should be avoided. Use "multiple partners"

Unprotected sex

Sex without barriers or treatment-as-prevention methods

Condomless sex with PrEP

Condomless sex without PrEP

Condomless sex

Death sentence, fatal condition, or life-threatening condition

HIV is a chronic and manageable health condition as long as people are in care and treatment.

"Tainted" blood; "dirty" needles

Blood containing HIV; shared needles

Clean, as in "I am clean, are you"

Referring to yourself or others as being "clean" suggests that those living with HIV are dirty. Avoid this term.

A drug that prevents HIV infection

A drug that prevents the transmission of HIV

End HIV, End AIDS

End HIV transmission, end HIV-related deaths

Be specific: are we ending AIDS diagnoses or are we ending the transmission of HIV?

 1  |  2  |  Next > 


Related Stories

HIV and AIDS: Language and the Blame Game
Betty Price's HIV Quarantine Query Echoes White Supremacist Voices in the Trump Era
Three Reasons Why Language Is Important in Media Coverage of HIV
More on Language, Media Ethics and Reporting on HIV Stigma


This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
 

No comments have been made.
 

Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)

Your Name:


Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining:

Advertisement

The content on this page is free of advertiser influence and was produced by our editorial team. See our advertising policy.