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Finding pride and resilience through sharing my HIV status

May 14, 2020
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I thrive when I’m visible, out in front, sharing stories of resilience and resolve, and asking questions. I am comfortable (and content) with my HIV status on display for the world to see. It’s a privileged position, I recognize that, but I won’t apologize for it. In fact, I’ve reached a point in my life where my HIV status is a badge of honour –– I’m resilient because of it, not in spite of it. But it wasn’t always this way.

While I was lucky to be alive, I felt broken and isolated

Like many long-term survivors, I was devastated by my diagnosis (1995). I was scared and ashamed, limping along from medication to medication on government disability supports. While I was lucky to be alive, I felt broken and isolated. I quickly succumbed to the tightly woven layers of stigma that too often accompany an HIV positive diagnosis. This was not the life I had imagined for myself and, at the time, I saw no path back to a fulfilling life.

…my HIV status is a badge of honour –– I’m resilient because of it, not in spite of it.

What I didn’t realize was that the road to restoring myself and overcoming stigma and shame would begin in the community most foreign to me, the HIV community. Thankfully, this community valued my experiences and input as person living with HIV and led me to a position as a peer researcher in a housing and health community-based research (CBR) study. It saved my life.

Inclusion through community-based research

Community-based research takes a novel approach: to evaluate the social and economic factors affecting the lives of people living with HIV. CBR also places a strong focus and high value on including people living with HIV in the work while building our confidence and skills from within the project itself.  As a peer researcher I was taught basic research skills, but more importantly, I was supported and encouraged in an environment of social justice.

Overcoming stigma and shame would begin in the community most foreign to me

Sharing lived experience

In time, I came to understand that as peer researcher interviewing other HIV positive people in my community, I was central to the project’s success. I found that people living with HIV regardless of race, ethnicity, gender, culture or any other social construct, are sharing a life experience of profound importance.

…importantly, I was supported and encouraged in an environment of social justice

As I began to understand that lived experience was (and is) expertise, I was able to leverage my own meaningful engagement to bolster my confidence and advance my career. GIPA/MEPA were not, and are not, a passive activity for me. I grabbed on to them hard and made a decision to take advantage of every opportunity that came my way. Over the life course of the study, those opportunities have included public presentations about the housing study, the important role of the peer researcher, and life as a person living with HIV.

Positive and Proud: no apologies, no spite

This was a decision point. Public disclosure is a very personal choice, and shouldn’t be made lightly. But I decided that the pros heavily outweighed the cons. I needed to face my fears and bring my HIV status out of the muck and mess of internalized stigma and into the arena of public debate.

I needed to face my fears and bring my HIV status out of the muck

This is where I found my voice and explored the power of shared stories to fight stigma. Since then, I and many others who have publicly disclosed their status, are living and thriving out in front. And we’re ready to welcome others who wish to add their voice and story to the chorus either publicly or anonymously.

Share your story

If you feel you are ready and that sharing your story might be helpful in some way to you or others, here on The Positive Effect could be the place for you.

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