Unseen Battles Part 1: Unmasking the Stigma Monster

We give our data and it goes into this void. Sharing findings with community is a way to validate my data. I shared it with you, I can see it now, I understand what it shows. And if the findings are surprising, it can spark more conversation in the community – it gets rid of the void. *Stigma Index peer researcher

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.

W‍hat is the cost of scientific knowledge? Gathering data often involves picking apart the lives of people and their communities. When we delve into data, we are tapping into the personal journeys of countless individuals – their hope, struggles, triumphs, tragedy. It is our obligation to ensure that these stories reverberate beyond the confines of research papers and that the insights gleaned are returned to the communities from where they came. This first of four blogs explores the pervasive stigma facing Canadians with HIV, and highlights the urgency of community-focused conversations and solutions.

What's the problem?

Experiences of HIV-related stigma are still incredibly high in Canada and is often one of the hardest things a person living with HIV must navigate. However, a lack of understanding about how stigma makes people feel unwell still persists, so it is a challenge to design solutions to reduce the impact of stigma.

‍The People Living with HIV Stigma Index is a global survey tool designed by and for people living with HIV that has been implemented in over 100 countries and aims to document lived experiences of stigma and discrimination. The Reach Nexus team along with its community partners are implementing the survey in Canada. In its first publication, and initial project presentation that followed, the team looked to understand how different types of stigma influence each other, and intersect with other health risks to impact health and wellbeing.

So what is Stigma?

Stigma revolves around the labeling of differences and negative stereotyping of people (e.g., people living with HIV), leading to an “us” versus “them” separation, and often resulting in prejudice and discrimination. Stigma can be broken down into three different dimensions based on how they affect each person: 

We had high rates of stigma in the HIV Stigma Index. For example, out of 724 participants living with HIV in Ontario:

• 45% said that people have physically backed away from them after learning they have HIV (enacted stigma)
• 57% said they feel ashamed of having HIV (internalized stigma)
• 75% said they are careful who they tell they have HIV (anticipated stigma)

We also saw participants struggle with their health:

• 38% had significant levels of depression
• 16% said they had poor/fair overall health

How does stigma impact health?

In this first publication, we aimed to understand what happens when people experience discrimination or prejudice (i.e., enacted stigma). Specifically, we wanted to see if it led to increased internalized stigma and depression and if this made people rate their health worse. We found that enacted stigma can indeed lead to increased internalized stigma and depression and that these are two possible pathways through which enacted stigma impacts how people rate their health.

‍Why is this important and what needs to be done? 

While these are likely not the only ways stigma can negatively impact health, understanding the role of these factors may provide insights into how we might develop solutions. There are already effective interventions for depression that can improve people’s health. Unfortunately, internalized stigma interventions sofar have shown limited value. So there’s a need for the development and evaluation of interventions that not only support people living with HIV when they are struggling with stigma, but also challenge the negative societal attitudes that perpetuate HIV stigma.

In shedding light on the importance of internalized stigma and depression, we call on researchers, policy-makers, and community members to recognize the detrimental effect of stigma and commit to developing actionable solutions designed for the people and communities who need them most.

‍Standing up to stigma!

The stigma problem won’t be solved in a day, but there are still things we can do now to stand up to stigma. Educate yourself. Spread accurate knowledge. Talking about HIV with your friends, family and community can reduce fear and shine a light on the debilitating effects of stigma.

Staying informed about available resources can also help to support people living with HIV who may struggling with stigma. I-AM.health is a relativley comprehensive, national search tool and resource that helps connect people to care, as well distributes free HIV self-test kits.

Community-based agencies and online platforms are available to help you or a loved one who needs support with HIV care, mental health, or stigma. Lastly, sharing your personal story or reading others’ stories can be an effective way to bring attention to experiences of stigma. We need to reach the people who aren’t being reached – who are still feeling this stigma – sharing stories may be one way to begin to ease the burden.

On this website, get immersed, and inspired to share some of our library of compelling stories that aim to change the lens on how we focus on HIV, shared by people living with HIV or someone close to them. It's also an open platform to easily share your own story.

Also tune in to pozcast, where host, James Watson, challenges the status quo and celebrates people living and thriving with HIV.

Lastly, check out this must-watch secret weapon, devised to beautifully pummel stigma...

From blob monsters that swell and contort, expressing human emotion, to a culturally safe cast of diverse characters, this 2D animation pushes beyond the obvious and expected. The film was created by Jenn Lee as part of the requirements of her Masters Research Project completed as part of the MScBMC graduate program at the University of Toronto.

We would like to acknowledge the peer researchers who worked on this study and a special thank you to Arthur Dave Miller, George Da Silva, and Michael Murphy 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.

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Bmc public health: 1 of 4

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