Stories for World AIDS Day: Living With Fear

If you are infected with HIV, you are not alone. In fact, there are 34 million people living with HIV right now, a huge and terrible number.

But if you are infected with HIV, you may feel very alone if you are living in constant fear of other people finding out about your infection. In western Kenya, where I work with the AMPATH program that provides HIV care to over 150,000 people, many families with HIV live with fear. They live with a fear that separates them from other people and shapes much of their lives -- from where they go to church to how they travel to the clinic to whether they tell their children that they have HIV.

And there are real reasons to be afraid. Stigma, discrimination, isolation, rejection. When other people find out about your infection, they can make your life terrible. Our patients are happy to tell you the stories.

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Martha is a stout woman with a broad, friendly smile, with whom one quickly feels at ease. She runs a stand selling fruit, and if you pause to look over her displays of fresh fruit, she will have you choosing a bag-full within moments.

And yet, despite her natural warmth, Martha lives with constant fear for her family.  Martha's fear isolates her family from the neighbors living in their compound and from their extended family members who mostly all live within walking distance. She is afraid that if any of these people learn that Martha and her middle son are infected with HIV, they will not want to have anything to do with them. They will treat them with disdain and refuse to be close to them. Martha takes a secret route when she comes to the HIV clinic every month. She waits until her neighbors are far away before she burns the trash that contains their empty medicine bottles. Even though she would normally ask her neighbors for help with the children when she is working late, she would never ask them to make sure that Charles takes his medicines on time.

Moreover, Martha is worried about telling her 11-year-old son, Charles, that he has HIV because she doesn't want him to tell the other children in the neighborhood. She has seen it happen:

"There is a neighbor whose child experienced such a problem. He had been on medication for HIV, and it seems the parent had told him about his HIV status. In school, the other children who were from the neighborhood started telling others that his mum said he was HIV positive, and they started saying that they shouldn't play with him. None of the children wanted to play with this child or even to draw close to him because he was HIV positive. So, it made us afraid. We thought, "If we disclose to the children, others will cause them stress in school." We were very afraid. We decided to keep quiet and not tell Charles that he had HIV until he reaches a reasonable age, maybe when he is 14 years."

Charles is asking a lot of questions these days. He wants to know why he has to take all of these medicines when he doesn't feel sick. He is afraid that something is wrong with him or with his mother or with someone else in the family, but he doesn't know exactly what the problem is. Deep down, he even suspects that he may have HIV, but he thinks that will mean he might die any day. Charles is afraid too.

34 million people with HIV. We don't have a cure for this disease yet, but perhaps for this World AIDS Day, we can make a commitment to curing some small part of this fear. When you are not afraid of HIV, when you are not stigmatizing or discriminating against people with HIV, you can help to wipe out some small part of this blight of fear.

This fear is such a burden for many families around the world to carry. How I would love to see that burden lightened.


*Photo is not of Martha although she has a smile much like this woman's. Fear means that you would never want someone to see your photo with a story about HIV.

Posted at 07:43


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