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Stigma Surrounding HIV

Reviewed by: HU Medical Review Board | Last reviewed: September 2019

Since the first cases of HIV and AIDS were reported in the population, significant stigma was attached to them. Although this was decades ago, and some strides have been made in HIV awareness and treatment, stigma and discrimination still remain.

What is stigma?

When someone is stigmatized or experiences stigma, it means others have a negative attitude or perception of them. In the case of HIV, this stigma is present due to long-standing misconceptions and a lack of education on HIV that exists across the world.

If stigma or negative beliefs lead an individual to treat someone differently, it is called discrimination. For example, a person may believe that individuals with HIV are all “bad” due to misinformation and a lack of education. This is stigma. However, if the same individual chooses not to hire someone with HIV because of their beliefs, it’s discrimination. Stigma refers to negative judgments made about a person or group of people, while discrimination involves actions based on these negative beliefs.1-3

Stigmatizing beliefs about people with HIV include believing as though only certain people or groups of people can get HIV, and these groups only include immoral individuals, outcasts, or criminals. Taking this further, individuals who may have these beliefs might then believe that all people who have HIV are making poor decisions and deserve to have it. These beliefs are examples of stigma and are both unfair and untrue.1

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Negative impacts of stigma

Individuals living with HIV experience stigmatizing attitudes regularly, and it can impact their self-esteem, desire to seek HIV testing and treatment, and overall health outcomes. Several studies have found that real or perceived stigma in clinical settings has been linked to delays in treatment, poor follow-up care, worse adherence to medications, and less access to preventative measures such as HIV testing or condoms.4-8 All of these factors can lead to worse outcomes, making stigma an important thing for both individuals with HIV and their healthcare providers to consider in order to increase access to care and improve long-term health.

Additionally, some groups that are at an increased risk of getting HIV, such as gay men or African Americans, may already experience long-standing stigmas and feel even more isolated. This creates a vicious cycle in which people who are stigmatized against feel isolated, leading to worse health outcomes and higher rates of illnesses like HIV, which then goes on to create more stigma against them. This cycle and the damaging effects of stigma on an individual’s physical, mental, and emotional health make it an important consideration in HIV care today.2

Seeking outside support, such as from a therapist or other mental health professional, may be helpful in navigating stigma and the overwhelming feelings that can come along with it. Seeking support to maintain mental health is never a bad idea, no matter what you’re going through. It can also help provide you with real-life coping strategies for dealing with stigma, complicated emotions, and others around you.

How has stigma changed over time with HIV?

Originally, HIV stigma was related to a lack of knowledge about what exactly HIV was. In the 1980s, very little was known about HIV, and it was often associated with gay men, drug users, sex (an uncomfortable topic to talk about for some), criminal behaviors, immoral practices, and death. This led many to believe that only certain groups could get HIV, and that it served as a punishment for behaviors that were against the status quo.

However, as we’ve learned more and more about HIV, its transmission, and its treatment, we know this is not the case. Anyone can be affected by HIV, regardless of background, age, sexual practices, race, financial status, and any other defining feature. HIV does not discriminate, and can impact anyone so long as a potential transmission event occurs.2,9

Little by little over time the public has increased its understanding of HIV, and stigma has been reduced. This has been partly due to campaigns to increase awareness, as well as several high-profile cases of HIV involving children, celebrities, and other individuals who didn’t fall in line with traditional stigmatizing beliefs and HIV stereotypes. This increased awareness and openness to talking about HIV has helped pave the way for a greater level of understanding, however, we still have a long way to go.

Stigma today

Although stigma is reducing as a whole, individuals living with HIV still experience fear and negative perceptions daily that impact their wellbeing. Positively, though, more programs are being developed on national and governmental levels dedicated to researching HIV, spreading awareness, and supporting those with the virus.

Several laws exist to protect the privacy of those with HIV and to prevent their discrimination in the workplace and other settings. Other organizations are dedicated to providing housing and low-cost or free care to those in need. Additionally, more people are talking about HIV and its treatment and prevention than ever before. Although there is much more work to do, the general trend toward increasing education, awareness, and resources for HIV is promising.3

Stigma is so often coupled with HIV. Connect and learn from others who have had similar experiences, here.