A new initiative is looking at how we reach zero tolerance when it comes to HIV. So many definitions can fall under the zero tolerance umbrellas. There’s zero tolerance in people continuing to get infected, zero tolerance in people not accessing mental health care or zero tolerance in having an unhealthy lifestyle and watching your t-cells drop. When I think of zero tolerance first I thought about how I get older my tolerance get lower and lower, but in a serious note I think one thing that needs to be revisited is reaching zero tolerance when it comes to HIV stigma.
Although stigma has been talked about, it can never be enough as it’s still a burden that many face as well as a barrier to understanding of how to live healthy with HIV.
25 years ago I was introduced to this disease as I discovered my status. I was introduced to stigma early by a health nurse who visited me as at that time there were not that many infections. It was a time when I thought only white people got ’the Monster’ (another stigma) Along with telling me how to live with HIV, she then had me get some bleach to show me how to wash down my silverware and toilet seat. Those behaviors still exists as people with HIV probably have had one incident of eating off of plastic silverware and paper plates.
In a funny way those many years ago I was less fearful of the disease and more about how people would see me and stigmatized me. It used to be that if you lost weight or were skinny you had the bug. My fear was so pronounced that even though I was always a skinny person before my HIV status, I was fearful of people seeing me and associating my weight with HIV. So I doubled up on everything. I wore two pair of pants and two shirts. I used to drink Ensure just so I could gain wait and can’t tell you how much pasta I ate. So much I’m surprised I’m not writing this in Italian.
Stigma prevented me from telling anyone, even myself. I was diagnosed by the army when I tried to join the army reserve. Even after they told me I didn’t go to the doctor because I didn’t want to walk into a building that serviced people with AIDS. I felt I wasn’t one of them. You have many people who get tested on these mobile vans and come up positive but don’t take the next step because of the stigma of walking into a building and sitting in a waiting room where just by being there; you feel they know your secret.
You don’t want to get your prescription filled in your neighborhood for fear of stigma. You may choose to not have it fill at all. Or you may choose to travel 45 minutes on subway to see your doctor when you have one just as good two blocks away from your house.
Stigma kills because you keep it your secret and it eats you up as you can’t share your condition for fear it will get out. I remember the weight of my secret and the feeling of being scarred as I couldn’t share the pain I was going through. When you have HIV you have many battles; Battles with loneliness. Battles with your faith as you ask God, why me? Battles with depression and anxiety issues. Living in pain.
We have to have zero tolerance with HIV stigma within our community, our homes and ourselves.
Zero tolerance in the community involves talking about it and not pretending it’s not there. This is specifically for the churches that operate in silence. There are many churches that water the garden of stigma each week and twist the words of God from love to hate. Churches are in the epicenter of this pandemic, and your silence or mistruths feed the beast of stigma. Churches need to be open and not hypocritical meaning you can’t hate us during the day but love us at night. No more.
Zero tolerance must happen in the home. We have to start talking about it. Turn off all the TV’s, the X-Boxes and Playstation and all those LCD gadgets and start talking about and learning about this disease that lives on your block. No more of turning your back on your children or kicking them to the curb because we choose to live in a house of ignorance.
Finally zero tolerance must happen with us who are HIV positive. We have to stop stigmatizing ourselves and blaming ourselves for being positive. We have to stop thinking God is punishing us because of our moral choices. Sometimes we’re so focused on dying we forget how to live. We become the walking dead. We have to be honest with who we are and unafraid to state our status. Some people say “I have HIV but HIV doesn’t have me”. If you’re going online dating sites and you’re putting down negative when you’re positive, HIV does have you. And we can’t stigmatize people who are negative because not all are close minded and not all are unwilling to be in a relationship with someone positive.
We have to have zero tolerance of people whispering their status. By living in truth we can make the stigma of it go away. I used to ask God why me? I used to ask why I was given these rocks. I was looking at what the rocks in the wrong light. When I looked at the rocks in God’s light I saw diamonds.
We all have to say I have zero tolerance for stigma.