I can picture Sarah perfectly. She sat quietly in the chair next to my desk at our main HIV clinic in Kenya. Sarah was 12 years old, but much shorter and thinner than a 12-year-old should be. Her hair was cut very short in a fuzz of soft curls over her head, but she had dreamy long and curling eyelashes and dimples so deep that you almost didn’t notice the rash speckling her face and neck and arms.
Sarah’s mother had not yet told her daughter that she was infected with HIV, but Sarah told me that the other kids at school would tease her about being sick and ask if she was “going to die tomorrow.” When you are short and skinny and have rashes all over your skin, the other kids in Kenya assume that you have HIV (and they are usually right). And so they call you names and tease you and make you think you are going to die.
This teasing made Sarah feel like she wanted to die. It made her curl up inside of herself and think that there must be something terribly wrong with her and with her family. She doesn’t want to take her medicines any more. She doesn’t want to be different. She is not smiling her beautiful smile when she tells me about school.
Families with HIV deal all the time with this type of name-calling, with the million ways that you can be made to feel ashamed and isolated because of this virus in your blood. Many of them live in fear that someone will find out about their secret infection and then their family will be stigmatized.
The name-calling does not stop when you are a grown-up. I will never forget the stories the women at our crafts workshop would tell me about church. We were having a question-and-answer session where the women could ask me anything they wanted about HIV. Somehow, they started to tell me what it was like for them at church. These beautiful, shining women who were working hard to learn new crafts that would generate an income for their families said that they would never want for anyone at church to know they were infected. If the pastor at church knows that you have HIV, he will point you out in the middle of the service, point at you in front of everyone and say that this is a person who has SINNED and you know this person is headed for hell. Then, everyone in the church will look at you like you are evil and dirty and whisper about you and call you names. The shining women feel ashamed and alone at church, even though it is a place that is important to them. Church is often the last place they would want to be honest and open.
I think I especially remember those women because they came right out and asked me what I thought Jesus would say about HIV. People don’t usually ask doctors about Jesus. Condoms, I can tell you all about. Jesus, I am less prepared. But I told them that the stories in the Bible say that Jesus loved people with leprosy – which was a disease that was a lot like HIV in those times. People with leprosy were thought to be dirty and sinful and you should stay away from them. But Jesus touched those people with leprosy and ate with them and did everything he could to show the religious people that he loved those people very much. I told them that Jesus would love them just as much. (Condoms are much easier to talk about!)
I have been working like a crazy person over the last 2 weeks on a grant proposal that is all about HIV-related stigma. Stigma is what makes it so hard for Sarah at school. Stigma is what makes those dear women cower at their churches. If I get this grant, it will provide us with some resources for our HIV care system in Kenya to measure just how much stigma and discrimination our families with HIV are dealing with and to try to figure out what makes it better or what makes it worse. I am a tired girl from pouring hours and hours into this grant application, but it will be all worth it if we can tackle even a tiny bit of the stigma problem among our 25 clinics in Kenya.
I want to make it better for Sarah at school – or at least to help her cope with it in a way so that she doesn’t get more sick. I want to make it better for those women who are sitting in church feeling ashamed and quiet. Well worth all of my waking hours and blurry vision this week…