Stigma

The most painful journey of PLHIV is that of stigma. Many of us have experienced it in different communities, but our pains and stories are similar. As a young girl living with HIV, I lived in fear and was not happy in my community because it made me feel different.

Stigma is a pandemic of its own. We have lost many people because of it. It has made people shy away from services that were available and free, and it has forced people into isolation. I am speaking of the HIV-related stigma that I have experienced and that many PLHIV have also experienced in our different communities. I am happy to be alive today and to witness that things have shifted a bit but have we done enough, especially as we speak of ending AIDS? I am happy to be alive and living in a community where I am called by my name, because between 2004 and 2006 my name in the community was "AIDS." That is how many people and peers used to call me. Stigma was that bitter in all corners of the world.

The dream of ending AIDS will be true when we end stigma.

I was young, but I never wanted stigma to define who I was. I am more than HIV, and it did not put me down. It gave me the courage to start volunteer work in my community because I needed a voice and I knew there were people like me, so I created a seat for myself. When I look at how things have shifted, especially the language, it makes me happy. I hope this will push us all to fight this stigma pandemic so we can end AIDS.

Stigma is and was not only about name-calling. It also appears in the places where we are supposed to receive help and where we are supposed to work. It’s striking how some hiring companies treated our status like a price tag. It’s sad that many opportunities excluded us because of the assumption that we did not have much time left to live. Stigma was truly a thorn in my side, which is so painful, but we are still here, and our lived experience will continue to make a difference.

Things are still not where we want them to be, but we are here and we will remain until the end of the road. We continue the work that other PLHIV have started and laid a strong foundation for us to keep fighting. There were days when we were introduced as “those infected by HIV,” but language has shifted. It is now people-centered: "People living with HIV." Language matters, it really does.

Until the end, PLHIV will be here to share our lived experience, because stigma is painful to forget. However, we have held our hands and built light for ourselves to continue the journey toward ending HIV. Our mental health was shaken many times because experiencing stigma is painful, especially in places where you expect support and services. Like I said, we are still not where we want to be, but things have changed, and we shall continue to use our voices and lived experience to achieve what we aim for. The dream of ending AIDS will be true when we end stigma.

There should be no place for stigma in our workplaces, health centers, policies, communities, or families. We should all be agents of change and spread the love. PLHIV are more than HIV. We lived through the hardest days of HIV and the hardest days of stigma. Now that more information is available, we can hold hands and overcome this. We can do this!

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