I can’t change society. I can change myself. I can change how I introduce myself to society. But I can’t change the anticipated stigma. No matter how I sell myself or tell you that I’m undetectable, people are still going to say ‘no, you can’t be around me’ – Peer Researcher, Canadian HIV Stigma Index

Let's talk stigma: Join us on this journey as we explore HIV stigma written with people living with HIV for people living with HIV and their communities.

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Stigma continues to persist today and can occur in many forms that impact a person in different ways. In our first blog post, we saw that enacted HIV stigma results in greater internalized stigma and depression. However, there is still a lot we don’t know about another type of stigma - anticipated stigma - and the impact it has on health.

Beyond Fear: Understanding Anticipated Stigma

Anticipated HIV stigma refers to the expectation that people will treat you differently because you have HIV. This belief can come from knowing about some of the myths and negative stereotypes about HIV or from past experiences of being discriminated against for having HIV.

The anticipation of being judged unfairly or treated differently because of who you are or how you live can cause people to withdraw from society. Fear of rejection is powerful and, while disclosing your status to a trusted person can sometimes be a relief, the fear of a bad reaction never goes away.

The Invisible Burden: When Stigma Shadows Lives

The team at Reach Nexus wanted to further understand the role of anticipated stigma and how it interacts with other types of stigma. Specifically, the study looked at how the kind of stigma we experience directly ('enacted stigma') or the negative beliefs we internalize ('internalized stigma') can lead to anticipated stigma and the impact this had on a person’s health.

This work uses data gathered from the People Living with HIV Stigma Index in Ontario, an international survey created by and for people living with HIV that measures people’s experiences with stigma and discrimination.

Voices Unheard: The Silent Struggle Against HIV Stigma

There was a high burden of anticipated stigma in the sample, with 85% of participants anticipating mistreatment and discrimination from others on the basis of their HIV status. Of the 724 people who took part in the study:

• 76% said they are very careful who they tell they have HIV
• ‍69% said telling someone they have HIV is risky
• 66% feel the need to hide the fact that they have HIV
• 63% said they think others believe that a person with HIV is dirty

From Internalized Shame to External Change: Breaking the Cycle

The study found that internalized stigma was associated with increased anticipated stigma which in turn contributed to worse health. In other words, feeling more internal shame and guilt about living with HIV led people to expect more prejudice or discrimination from others because of their HIV status, which resulted in lower mental health and overall health.

Surprisingly, the prejudice and discrimination that people living with HIV actually face ('enacted stigma') doesn't seem to affect health by increasing the stigma they expect to face in the future ('anticipated stigma'). This could mean that individuals living with HIV might expect to encounter stigma even if they haven't directly experienced prejudice or discrimination themselves.

Embracing Solidarity: The Power of Shared Stories and Support

While people living with HIV lead fulfilling lives, the shadow of lesser known, 'anticipated stigma' still looms. We must do more. Normalizing living with HIV by sharing lived experience stories of resilience, and triumphs, and amplifying ongoing challenges with stigma can alleviate fear around HIV. In turn, this could reduce feelings of anticipating negative reactions and behaviours from others.

However, leaning solely on the HIV community is not enough. We need meaningful engagement and collaboration with governments and institutions to create widespread national policies to fund HIV programming. And in turn, bring education and awareness about HIV, and other stigmatized identities associated with HIV to the general public.

We also need to address structural stigma in areas such as healthcare, education, and employment sectors. People living with HIV consistently endure negative experiences in these environments. Systemic change in attitudes and practices in these areas would rebuild inclusive environments where people no longer feel compelled to anticipate stigma.

Supportive communities and organizations are crucial in addressing this challenge. Resources like community groups and interactive digital platforms, like this site and program, The Positive Effect, as well as, I-AM.health, both offer care, community, and understanding, highlighting the importance of solidarity.

Action Over Apathy: Our Collective Fight Against HIV Stigma

In a world where people thrive despite their HIV status, it is imperative that we confront each of these persisting challenges head-on. While communities and organizations forge spaces of support, our collective effort remains crucial in dismantling the barriers of stigma.

Now, more than ever, education and action hold the key to transformation. Stand against stigma wherever it surfaces, championing the cause not as bystanders but as active participants. Each of us bears the responsibility to enlighten ourselves and others, turning awareness into a beacon that leads us to an inclusive future.

Still, the fight against HIV stigma is a collective endeavor that requires more than just awareness—it demands action. It's up to us to use our knowledge for good, to speak out against prejudice and to support those in our communities. When you see stigma, act. Educate yourself and others, and join the efforts to create an inclusive environment for all.

Our shared commitment can drive change. By working together, we can overcome the hurdles of stigma and build a more understanding society. Let’s take the step from awareness to action today.

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We would like to acknowledge the peer researchers who worked on this study and a special thank you to Michael Murphy, Anthony B, George Da Silva, and Arthur Dave Miller for contributing to the writing of this blog and lending their lived expertise–without them, this work would not have been possible. We would also like to thank the study participants for sharing their stories and allowing us to document their personal experiences with HIV stigma.

Bmc public health: 2 of 4

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