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HIV stigma

HIV stigma

In many ways, ignorance, fear, and stigma have come to define the HIV and AIDS epidemic that swept across the world in the 1980s. It killed thousands upon thousands, some of whom had only a few weeks or months from diagnosis to death, even if they were diagnosed before they died.

Since the 1980s, the HIV/ AIDS landscape has changed beyond recognition with enormous strides in treatment and care. Today, HIV is commonly recognised as a chronic disease that can be successfully managed on a long-term basis. Nevertheless, people living with HIV continue to face stigma and discrimination, and it remains a major issue.

HIV stigma appears in many forms and ranges from rejection by friends, family or partners to being physically assaulted. It's also a distinctly unattractive trait among some gay men using hook-up web apps.

stigma ˈstɪɡmə/ noun
Mark of shame and humiliation often driven by views, beliefs and assumptions we make about people. Makes it more likely that people will be singled out, ostracised, or marked out as strange, different (not in a nice way) and, in some cases, thought of as dangerous. Stigma is crippling, bringing on feelings of isolation, shame, hopelessness, blame, self-hatred, which often prevents people from seeking help and support.

What is HIV stigma?

HIV stigma is negative attitudes and beliefs about people with HIV. It is the prejudice that comes with labelling an individual as part of a group that is believed to be socially unacceptable. Examples include:

  • Believing that only certain groups of people can get HIV
  • Making moral judgments about people who take steps to prevent HIV transmission
  • Feeling that people deserve to get HIV because of their choices

Real or imagined, HIV stigma often fuels myths and misconceptions about HIV and people living with HIV, and there are reasons for this:

  • If undiagnosed and untreated, HIV remains a serious, life-threatening health condition.
  • Some people have strong views about sexual behaviour, often rooted in faith and religion. They may think that there are situations in which sex is wrong or that certain people shouldn’t behave in particular ways.
  • There is a long history of illnesses and diseases being stigmatised, including tuberculosis, cancer and, more recently, monkeypox.
  • People who don’t understand HIV transmission and/ or Undetectable = Untransmittable (U=U)

What is discrimination?

While stigma refers to an attitude or belief, discrimination is the behaviour that results from those attitudes or beliefs. HIV discrimination is the act of treating people with HIV differently than those without HIV. Examples include:

  • A healthcare professional refusing to provide care or services to a person living with HIV
  • Refusing to touch someone living with HIV, casual and/ or sexual contact
  • Socially isolating a member of a community because they are HIV positive
  • Hook-up profiles that say someone won't meet anyone with HIV (sometimes saying they are "clean").

What are the effects of HIV stigma and discrimination?

HIV stigma and discrimination affect the emotional well-being and mental health of people with HIV. People with HIV often internalise (bury inside) the stigma they experience and begin to develop a negative self-image. They may fear they will be discriminated against or judged negatively if their HIV status is revealed. “Internalized stigma” or “self-stigma” happens when a person takes in the negative ideas and stereotypes about people with HIV and start to apply them to themselves. HIV internalised stigma can lead to feelings of shame, fear of disclosure, isolation, and despair. These feelings can also keep people from getting tested and treated for HIV.

What can be done about HIV stigma?

  • Ending HIV stigma is more than a soundbite or a slogan
  • We can all help through our words and actions in our everyday lives
  • Get the facts about HIV and know about Undectable = Untransmittable (U=U)
  • Know how HIV stigma affects people living with HIV
  • Talking openly can normalise the subject and start conversations
  • Educate and inform others, correcting misinformation and misconceptions
  • The words we use matter: choose them carefully using preferred terms
  • Be inclusive, speak up, and stand tall

"Many people have fears, prejudices or negative attitudes about HIV. Stigma can result in people living with HIV being insulted, rejected, gossiped about and excluded from social activities. At its extreme, stigma can drive people to physical violence.

People living with HIV often feel nervous about telling others that they have HIV due to the fear of stigma or discrimination. This can lead to isolation and feeling unsupported, which can have a significant impact on health and wellbeing.

Stigma, whether perceived or real, often fuels myths, misconceptions and choices, impacting people’s HIV education and awareness. It can result in people with HIV believing some of the things that other people say about HIV, even when these are not true."

What is stigma? | NAM aidsmap

More

What is stigma? | NAM Aidsmap
 Tackling HIV Stigma: What Works | NAT
Stigma Language Guide | CDC | US
HIV stigma and discrimination | Avert
Stigma and HIV | Terrence Higgins Trust
The Positive Effect | The Positive Effect
Tackling HIV Stigma: What works? | NAT | PDF
Ending HIV | It’s time to end HIV Stigma | AU
Tackle HIV | THT/ ViiV

 HIV testing | MEN R US
 HIV treatment | MEN R US
 Understanding undetectable = untransmittable (U=U) | MEN R US
 PrEP | MEN R US

News

New data exposes shocking stigma and discrimination against people living with HIV | THT | 1 Dec 2022
Fighting HIV Stigma and Proud: march, vigil and rally | THT | 1 October 2022
How do people feel after disclosing their HIV status on social media? | nam aidsmap | 20 May 2022
More straight people are catching HIV than gay men for first time in a decade | Metro | 7 Feb 2022
BBC News - HIV: People with virus or taking PrEP to be allowed to join armed forces | BBC | 2 Dec 2021
BBC News - HIV: The misinformation still circulating in 2021 | BBC | 1 Dec 2021
The end of HIV transmission in England is within sight, but we can’t be complacent | The Guardian | 1 Dec 2021
HIV diagnosis: Marlon Van Der Mark tackles stigma | BBC News | 23 Nov 2021
People living with HIV in the media: irresponsible, unhealthy and 'other' | nam aidsmap | 8 Oct 2021
The hardest outcome of all: HIV and suicide | nam aidsmap | 11 Aug 2021
Home Office failed to put in place system to protect detainees with HIV | The Guardian | 30 Jul 2021
Stigma, discrimination and lack of understanding about HIV persist 40 years after first reported cases, new research finds | NAT | 29 Jul 2021
HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation | BMC | 30 May 2021
The single biggest risk factor for gay, bi men becoming HIV positive | Plus | US | 24 Sep 2020
Gareth Thomas and HIV stigma: 'It takes people like him to fight against it' | BBC | 15 Sep 2019
Meghan and Harry pay touching tribute to Princess Diana’s HIV work to mark first day of Pride Month | Evening Standard | 1 Jun 2019
Being black and gay: how intersectional stigma impacts on the uptake of PrEP | NAM aidsmap 17 May 2019
HIV criminalisation cases recorded in 72 countries, including 49 in the last four years | NAM aidsmap | 3 Jun 2019
Stigma, access and testing: why HIV is still rising in Europe | NAM aidsmap | 11 Dec 2018
Tackling HIV stigma in the health service | The King's Fund | 1 Dec 2018
The stigma of HIV still remains | The Guardian | 15 Aug 2013
End stigma around HIV testing, says Prince Harry | Guardian News | Guardian News | 17 Nov 2018 | 2m 11s
Grindr Users Talk About HIV Stigma | Grindr | 9 Oct 2018 | 4m 48s
Living with the Stigma of HIV | BBC Three | 14 Jul 2018 | 3m 25s
Our treatment of HIV has advanced. Why hasn't the stigma changed? | TED Talks | 25 Jan 2018 | 17m 6s
HIV: living with the stigma | Channel 4 News | 17 Dec 2015 | 5m 12s
Living with the stigma of HIV | Michael Rizzi | 24 Nov 2015 | 6m 48s
The stigma of HIV/AIDS: connecting the dots | RYOT | 21 Apr 2015 | 2m 58s
Luke on HIV stigma | Saving Lives @ Heart of England NHS Foundation Trust | 21 Nov 2014 | 1m 6s
HIV stigma: I have judged.. other people are going to judge me | HIV Foundation Queensland | 16 Jun 2014 | 9m 12s
The day I found out I was HIV positive | ImFromDriftwood | 8 Jun 2012 | 3m 2s

HIV Stigma Index Worldwide
The People Living with HIV (PLHIV) Stigma Index is a standardized tool to gather evidence on how stigma and discrimination impacts the lives of people living with HIV. It was developed to provide much-needed data and evidence that could be used to advocate for the rights of people living with HIV.
People living with HIV stigma index (worldwide) | Stigma Index

 
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