The power of words: How language shapes stigma and health-care experiences

Using derogatory terms can contribute to the stigmatisation of those who are struggling. Picture: Ehimetalor Akhere Unuabona/Pixabay

Using derogatory terms can contribute to the stigmatisation of those who are struggling. Picture: Ehimetalor Akhere Unuabona/Pixabay

Published Nov 29, 2023


Does language make a difference when we address serious health issues? Absolutely, say researchers at Penn State College of Medicine. Language too often belittles and diminishes patients.

Avoid the “war” metaphors, advises Daniel George, an assistant professor of medical humanities at the college.

While such terminology is common in the medical community and the media, such language can backfire by creating fear and stigma, turning patients into victims and even diverting resources from preventive care.

Language can indeed influence how diseases like HIV and mental illness are perceived. The way we talk about these conditions can shape public attitudes, stigma, and the experiences of those affected.

When it comes to HIV, using stigmatising or judgmental language can perpetuate stereotypes and discrimination. It is important to use language that is respectful, accurate, and person-centred.

Instead of labelling individuals as “HIV-infected or “Aids victims”, it is more appropriate to use terms like “people living with HIV” or “people affected by Aids”. This helps to humanise the condition and reduce stigma.

Same goes for the language we use when it comes to understanding mental illness. Using derogatory terms or casually using mental health conditions as insults can contribute to the stigmatisation of those who are struggling.

It is important to use language that is compassionate, non-judgmental, and emphasises that mental illnesses are medical conditions.

Instead of using terms like “crazy” or “psycho”, it is more helpful to use neutral and respectful language like “person with a mental health condition” or “someone experiencing a mental health challenge”.

According to Statistics SA, about 8.2 million people, or 13.7% of the population, are living with HIV. We need to be more sensitive about the way we talk about it.

Cindy Pivacic, who has been HIV-positive since 2004. Picture: Supplied

According to Cindy Pivacic, who has been HIV-positive since 2004, while much work has been done to educate, there is still a gap in people's understanding of HIV and their treatment of people living with it.

“Hearing you are HIV positive is a distressing experience, and in 2004, the judgement and discrimination were rife, so I chose not to disclose my status for another six years.

“Once I publicly revealed my status in early 2011, I realised how uninformed people were, and sadly, still are, about using appropriate language when speaking about HIV,” said Pivacic.

Along with the ignorance comes a long list of thoughtless and insensitive questions and comments, such as: ‘Do you have Aids’, ‘Do you know how you got it’ and ‘How long do you have (to live)’.“

“People should be mindful of what they say. Before disclosing my HIV status, I heard all the negative connotations expressed about HIV and Aids, and this prolonged my disclosing my status, resulting in me not pursuing the necessary medical treatment sooner.”

Although there has been some forward movement, unfortunately for many, the reality hasn't changed. Many South Africans are still worried about the stigma around HIV. This delays the process of seeking treatment that can help them live normal lives.

She adds that more appropriate questions could be: How can I support you? Can you explain the difference between HIV and Aids? How does your treatment benefit you?

Pivacic, along with her life insurance partner AllLife, is working to educate and inform South Africans about using the right language when discussing someone's HIV status.

She believes it's important to use respectful and inclusive language that shows understanding and empathy. Service providers like AllLife should also know how to support clients and their families affected by HIV.

Here are some terms Cindy suggests using:

- A person living with HIV: This shows that you're talking to a person and acknowledging them beyond their HIV status.

- HIV-positive: This term focuses on the condition rather than defining someone solely by their diagnosis.

- HIV status: It's better to refer to someone's status, as it's a neutral and factual way to describe whether they have tested positive or negative for HIV.

- Undetectable: When someone's Anti-retroviral therapy (ART) is successful, their viral load becomes undetectable, meaning the virus in their blood is very low, reducing the risk of transmission.

- Viral suppression: This refers to successfully controlling HIV replication, usually through ARTs, resulting in a low viral load and improved health outcomes.

So, what are the terms deemed unacceptable or discriminatory?

Here is some of the language to avoid:

Aids victim/sufferer: These terms are negative and perpetuate the perception that people living with HIV are helpless or defined solely by their illness.

Diseased/infected: There is a negative stigma to these terms, and they add to the misconception that people living with HIV are dangerous or morally tainted.

Clean/dirty: This is a no-no. HIV-negative individuals aren’t ‘clean’ and morally superior. Rather ask, ‘When was your last HIV test?’ or ‘Do you know your HIV status?.’

Aids patient: Aids is the advanced stage of HIV; this statement doesn't recognise that HIV is a manageable condition that millions of people live with.

Using language that promotes understanding, compassion, and respect when talking about HIV is crucial, said Pivacic.

She believes it's important because it can help lessen the stigma, encourage open conversations, and provide support for those living with the virus.

Steph Bester, who is the CEO of AllLife, emphasises the need for the industry to collaborate with people who have HIV. By doing so, they can better understand the difficulties they face and be more aware and considerate of their needs.

Bester said being HIV-positive did not define a person and Pivacic was a shining example of that.