My Story of Stigma

March 14, 2016

by Lisa Johnson-Lett

Stigma is borne out of fear. This fear causes us to express our emotions through behaviors that are both biased and discriminating. We bring on fear because we have not yet changed our thought process and we lack knowledge. In order for us to create a stigma-free environment, we must become aware of the prejudice, bias, and discrimination challenges within ourselves. We have to reflect upon our own behavior, questioning – why do we think the way we think? Or reasoning – why we respond the way we respond?

It is because of the challenges I faced with my own demons I am now able to embark on a new era, come face-to-face with the giants, knock out Goliath, and hurdle over the fears when it comes to HIV/AIDS.

Before I became a survivor—and beyond, learning to thrive–I admit I was one of those who stigmatized anything associated with HIV. How ignorant was I! And I am sincerely apologetic. Upon diagnosis, I became my own worst enemy. Everything I had said about people came back on me. How can somebody look like they got it-(HIV)? If someone had a cold sore on their mouth I wouldn’t want them to even pass by me, let alone kiss me. You know those church hugs and kiss-on-the-cheek moves the deacons give you in the hometown Baptist churches? Well, I saw one deacon with one of those cold sores, and I was like, I know he’s gay and he’s probably got it–you know, the three letter H word. I was too scared to say HIV.

But when—on the day August 23, 1995— I found out about Lisa, I broke down and cried. I became scared of myself, so ashamed I didn’t want to look in the mirror. I hated myself. I became a disgrace to mankind, society, and to my own self. Self-worth, what was that? No self-esteem, I felt lower than low. I would cry and wonder how I could make this go away. If I had three wishes, my first wish was to be in another body that was free of HIV. Days I went without washing my genital areas. I felt I could catch it all over again. I didn’t want the damp cloth to keep contaminating myself.

But then there was the face of stigma inside the immediate family through my children. At ages 11 and 15, my ex-fiance told my daughters my status without my permission to disclose. My children asked if it was true. I never lied to my children and I was not about to lie to them now. So I told them both yes, it is true. They gave me these funny looks–like why didn’t you tell us? Before they opened their mouths for questioning and concern, I let them know, “Mommy works and pays all the bills–you are not working yet but your task in the house is to go to school and your reward is to get good grades. Your work is not to worry about mommy and her diagnosis. This is why I didn’t say anything to either of you, because you are still school age and I do not want anyone to belittle you or make you feel unworthy.”

And that’s when it happened! The moment I dealt with two types of stigma. Yes, I said it–there are two forms of stigma on the receiving end that are both positive and negative. My oldest tells me (with a sassy attitude and a smart-alecky mouth), “I don’t care what you have just as long as I don’t got it!” Meanwhile my baby-girl, (so short, she can’t even reach my chest), stands on her tippy-toes and says, “Mom, it’s okay! No matter what you have, I’m going to love you anyways”…and she kissed me not on my cheeks but dead center in the middle of my lips. And that right there became a turning point in my life.