In many ways, ignorance, fear, and stigma came to define the HIV and AIDS epidemic that swept across the world in the 1980s. It killed thousands some of whom may only have had a few weeks or months from diagnosis to death, if they even managed to be diagnosed before they died.
Since the 1980s, the HIV/ AIDS landscape has changed beyond recognition and, with strides in treatment and care, HIV is now considered to be a chronic medical condition rather than the fatal illness it once was.
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.
Unfortunately, people living with HIV have been stigmatised and discriminated against since the virus was first discovered in the 1980s, and it continues today. Stigma and discrimination faced by people living with HIV remains a major issue.
It 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.
What is HIV stigma?
HIV stigma is negative attitudes and beliefs about people with HIV. It is the prejudice that comes with labeling 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
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 health care professional refusing to provide care or services to a person living with HIV
- Refusing casual and/ or sexual contact with someone living with HIV
- Socially isolating a member of a community because they are HIV positive
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 keep people from getting tested and treated for HIV.
HIV testing | MEN R US
HIV treatment | MEN R US
Understanding undetectable = untransmittable (U=U) | MEN R US
PrEP | MEN R US
What causes HIV stigma?
HIV stigma is rooted in a fear of HIV. Many of our ideas about HIV come from the HIV images that first appeared in the early 1980s. There are still misconceptions about how HIV is transmitted and what it means to live with HIV today. The lack of information and awareness combined with outdated beliefs lead people to fear getting HIV. Additionally, many people think of HIV as a disease that only certain groups get. This leads to negative value judgements about people who are living with HIV.
What can be done about HIV stigma?
- Get the facts and be informed
- Learn HIV basics and what it means to live with HIV
- Having the facts can help reduce misunderstandings and decrease stigma associated with HIV
- Talking openly about HIV can help normalise the subject
- But be mindful of how you talk about HIV and people with HIV
- We can all help end HIV stigma through our words and actions in our everyday lives
HIV Stigma | CDC (US)
In 2009, the United Kingdom was one of the first countries to implement the rollout of the People Living with HIV Stigma Index. This generated 5 reports, which can be found here. Findings were based on peer interviews with community members. Building on the success of the 2009 rollout, the 2015 Stigma Survey continued to engage with community while also gaining NHS Ethics approval, thus creating a more academically robust dataset.
"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
What is stigma? | NAM Aidsmap
Tackling HIV Stigma: What Works | NAT
Stop HIV stigma | GMFA
HIV isn’t dirty, stigma is | GMFA
HIV stigma and discrimination | Avert
Stigma and HIV | Terrence Higgins Trust
People Living with HIV: UK Stigma Index | FPA | 2015-17
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
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