The Killing Disease

Editor’s note: Swaziland has the highest HIV infection rate in the world. Life expectancy there has fallen from 55 to 29 since AIDS first appeared. Peace Corps has had a strong presence in Swaziland for many years. Almost all volunteers there are involved in some form of education or community development that involves AIDS prevention, education, or provision of information and resources. Vincent D’Agostino was one of those volunteers. Recently his frustrations and sorrow poured out in an entry on his personal blog. He has given us permission to publish an edited version.

I was a Peace Corps volunteer working in Swaziland teaching about all HIV/AIDS related issues: prevention, transmission, care, treatment, support, you name it. Sub-Saharan Africa has about 25 million people living with HIV. Swaziland has the highest percentage of people in the world living with HIV, not the most people in one country but the highest percentage.

Swaziland only has about 1 million people and 42.6 percent of them are infected. Supposedly only 20 percent know their status. That’s almost half the population and that number climbing 4 percent in the last two years works out to about 426,000 people who are infected and may die. There are thousands of orphans who have lost parents who’ve died from AIDS related illnesses. Even in a country where ARVs (antiretroviral) drugs are free, it is still difficult for people to get to them, take them like they should, and continue to take them.

There are too many helping hands, too many players, too many fighters, too many NGO’s, too many messages, too many mixed messages, too many everything. There’s no cohesion, no communication. There is constantly a breakdown of all these things wherever you go. No one knows how to work together, and I’m guilty of that too. It really is a land of confusion out there.

What causes the spread of HIV? Does poverty cause it? Does HIV cause poverty? Where did HIV come from? What I have learned is that what kills people is not the HIV or the AIDS or the AIDS related illnesses, but the stigma attached to it and the silence about it. That’s what’s killing everyone here. It ends up being too late too help anyone because they were too afraid to get tested, or no one tells anyone because they are ashamed and won’t get any support from their family or friends. Or families while hiding their sick love ones bring them to traditional healers or pastors to cure them of their disease without even knowing their status.

This disease of silence is killing everyone, even those who are not positive. It’s okay to be positive. It’s nothing to be ashamed of. Since I’ve been here I’ve attended a few funerals. I suspect all of these people have died from AIDS related illnesses.

I was there for two years and have just recently been seeing how it is affecting the very Swazi extended family I live with. One girl, my age, was sick after she had a miscarriage, deathly sick for two months. No one suggested to her to get tested until I mentioned it to someone in the family. She was taken to the testing center but refused to enter. She eventually tested and refused treatment. She died. I told the family you are going to a funeral, an all night vigil for someone who chose to die. You’re mourning for someone whom you didn’t have to mourn for. It was preventable. But she chose silence.

A male family member my age has lost a dramatic amount of weight, dramatic! He looks like a bag of skeletons. I suspect he has AIDS.

I just discovered someone else in my family, a woman 10 years older than me, is deathly sick. She and her husband have been having some problems. He cheated on her and now she is sick, deathly sick. I mentioned to a family member that she should get tested. The family’s member response was, “Swazis don’t like to be told they’re sick and they’ll hate you for telling them.” My response: “I don’t care if people hate me or like me, it’s life or death.”

Since I have been living with this family, there has been a seven year old who has been sick on and off, mostly on all the time. I thought in the back of my mind he might be positive but I think I didn’t want to take action or I didn’t want to believe it because he’s family; I have lived with this boy for so long. Recently he has been very, very sick, sores on legs, runny nose, tired, weak, walking with limp. Now his eye is swollen shut and his knee has swelled up. I finally took action and talked to his aunt who was receptive. He now lives with the aunt because his mother isn’t part of this life. His father works and lives off in a distant city full time. The aunt is the only who takes care of him. When she first took him to the hospital, the hospital didn’t even suggest that he should get tested which pisses me off. In my opinion when someone is very sick here, the first thing that should happen is an HIV test.

However, after all this, the boy is now with his father and the aunt never took him to the clinic to get tested and I have no way of finding him.

I asked my bhuti (brother), “Sandile, don’t you see; can’t you see how HIV is affecting and killing your very own family?” Sandile sees it. I see it. It’s there, but so many people choose to be silent about it. They choose not to talk about it, as if not talking about it will make it go away. Or if not talking about it, no one will know that they hide their sick away in dark rooms or take them to traditional healers to be healed. Sometimes they think it’s a curse. Others don’t even believe that HIV exists in the first place. Too many people are silent about it even though the AIDS awareness messages are all over the place. On billboards larger than life. AIDS awareness is being promoted there and on radio and TV and in newspapers. The media is telling the people it exists and the people listen, they nod, they agree, they know, but when it comes to them, most of them, it’s as if everything they know and have learned about HIV is put on the backburner that just ran out of gas. The light goes out, and all the traditional thinking creeps in and takes hold. They think this can’t happen to me. They see the sick. They hide the sick. They hide their dying. They claim it to be a curse. They think a traditional healing will cure it. Or help them. They think HIV and AIDS came from America. It’s all mixed up.

I fear that when I come back in 10-20 years everyone, the people I have come to love and care for will be gone. So much of this killing disease has nothing to do with HIV or AIDS; it has to do with the stigma and the silence that we choose not to talk about when we find that the front line of this war on HIV and AIDS has finally reached our doorstep. We choose to close that very same door and lock it and blow out the lights. We choose to bask in the dark, hide in the silences, and hush the very sick and dying to death.

We choose to ignore the obvious. That it is us, all of us, who are losing this very same war and if you think I am being over dramatic, then you haven’t spent two years in Africa dealing with these very issues.

by – Vincent D’Agostino, RPCV, Swaziland
Source – Lesbian, Gay, Transgender Peace Corps Alumni