Navigating life with a health condition as heavily stigmatised as HIV presents significant challenges and can lead to profound feelings of isolation. This stigma can severely impact the emotional well-being of people living with HIV. The connection between HIV and mental health is substantial, yet it is frequently overlooked and disregarded. There is often an expectation for people living with HIV to not only endure public scrutiny, but also to respond with grace and acceptance of their condition.
Consequently, the focus tends to shift towards accommodating the comfort of those who are not affected by HIV, rather than prioritising the path to healing for those living with the condition.
I speak with profound passion on this topic as someone who was born with HIV and has lived with the condition for the past 15 years.
I was only 14 years old when I was diagnosed with HIV. At that time, I was in grade 10 and attending a youth day event representing my school. When the opportunity to undergo HIV testing presented itself through a group of peer educators, I was eager to participate. Being young and naïve, I thought, “I’m young, not yet dating, and this will make me appear knowledgeable and smart.” I went ahead with the test, and that is how I discovered my HIV status during a school trip.
Upon learning my result, the only words I could muster were, “But I’m just 14, I didn’t do anything.” I was overwhelmed with fear. Unable to cry at that moment, I was preoccupied with the presence of my friends waiting just outside the door. I feared that showing any sign of distress would reveal my result to them. I composed myself and left the consultation room as if nothing had happened. This became the reality of my first five months living with HIV—burdened by the fear of disclosing my status. This shows how isolating HIV stigma is.
HIV-related stigma is greatly dehumanising and undermines the dignity of people living with HIV. It seeks to isolate and deny us the same rights and opportunities afforded to others. This stigma aims to diminish our sense of worth simply because we are living with HIV.
The persistence of HIV stigma is a major factor contributing to the ongoing increase in HIV rates. It continues to hinder people from disclosing their status and adhering to treatment. The pervasive effects of HIV stigma even extend to the rejection of prevention methods.
There is so much we can achieve in the fight against HIV through collectively recognising HIV as a human issue, not solely the concern of those living with HIV. There is no reward in opposing and othering people living with HIV; the true victory lies in addressing the virus itself.
At the age of 18, I publicly disclosed my HIV status on Facebook through an open letter titled: An Open Letter To HIV. Through my social media presence, where I document my life with HIV, I have had the privilege of building a supportive community of people affected by HIV. This community has helped me in changing the narrative on HIV, and what the journey of a person living with HIV is supposed to look like.
Calling myself an HIVictor has been a form of protest for me—a reclamation of my life and identity from the negative perceptions associated with HIV. I refuse to let my story be seen as a mere tragedy. I am not a sad story. I live, and I continue to thrive.
I have always been deliberate in clarifying that my journey with HIV should not be misunderstood as extraordinary or anything outside of just being a girl who wakes up every day and tries. The difficulty I face in discussing my mental health highlights the impact of HIV stigma. Stigma has led me to fear that my experiences with mental illness might be seen as a predictable outcome of my HIV status. Despite my efforts to shift perceptions, I acknowledge that this journey can be isolating, even for someone as candid as myself at times.
The intersection of HIV and mental health shows difficult challenges, speaking openly about them is important, that is how we learn. The stigma surrounding HIV can worsen mental health struggles.
I have shared my story and experiences because I believe we can contribute to a more informed and empathetic society. It is important that we prioritise our mental health as we do with our physical health.
Let us work together to break down the barriers of stigma and create spaces where people living with HIV can seek help without fear of judgement. Through collective effort, we can unite in intentionally choosing to place kindness at the heart of our actions. We owe each other empathy, decency and kindness. People living with HIV are worthy of empathy, decency and kindness too!