It has no cure. There is no medicine for you here. I tell you the name of this disease but you have never heard of it. There are no books in which to read about it, no internet to google.
I tell you that the disease will infect your spouse and your children. It will be the cause of your death. Your children will be sick with it and you will die before you are old.
If you are unmarried, I tell you that you should not even marry. You should just stay alone.
Others will look at you and wonder what this disease is. They will whisper and avoid your touch.
I tell you the truth and there is fear, wild and painful. You have seen others die, slow and alone. There is no future with this disease. So maybe you will strike out in hopeless hysteria. Maybe you will drink pesticide and feed it to your children. Maybe you will try to abort your unborn child to save it from this disease. Maybe you will stab your husband because you think it is he that gave to you.
Maybe it is better that I don't tell you at all. When you come to me, saying, "Doctor, what is this thing that makes me sick and weak?" maybe I just give you antibiotics or vitamins. Maybe I say it is something common and tell you that it is okay. You will leave and you will trust me because I am a doctor. You will feel better, hoping in this medicine, this false hope, that I have doled out in tablet form. Then you will feel the sickness again and you will just think the thing is back. Really it never went away but I am gone and I don't have to see your face anymore. And I feel better because you felt better and you thanked me when you left.
So which do you prefer?
What if I told you now...that everything I have mentioned above....I have seen occur in Kenya and Sudan when it comes to one disease: HIV.
The diagnosis of HIV continues to be surrounded with stigma and prejudice. Very strict cultural traditions must be adherred to when it comes to the diagnosis and disclosure of HIV. Here in Kenya, there is a special counseling team or nurse that discloses results on the OB ward. It is very culturally unacceptable to just go to someone and give bad news; instead it is given in a very drawn-out and redundant manner. I have learned to accept and appreciate this cultural nuance. On a side-note, I have also seen bad news given - and handled- very badly with patients being prone to hysterics and often inflicting harm to themselves and others.
In southern Sudan, at this moment, there is a battle raging. This year, my team decided to bring and perform HIV tests. Primarily the goal was to use this on potential transports. But we soon found patients that we suspected had the disease.
They did.
Within 48 hours, we stopped testing, due to the overwhelming amount of positive tests. This area is very rural and very uneducated. Imagine not even knowing what HIV is. They have had no education and have no treatment in this area, despite having access to a Medicins Sans Frontiers aka MSF (Doctors Without Borders) clinic.
We were very quickly faced with a quandry. How do you tell someone that they have a disease that they've never heard of? How do you tell them about all the horrible aspects of not having treatment?
Like Kenya, the process of breaking bad news in Sudan is a very time-consuming process. In the US, we are taught as physicians that bad news should be given gently, but very honestly and directly. It did not take long for a cultural debate to rise among team members as to how to break this bad - and volatile - news to this community.
Let me digress for a moment: I recently read about a book for missionary kids. It explores the issues of moving from a home culture to a foreign culture and how this changes them. The home culture is described as yellow, the new culture as blue. After living in the new culture a bit, the missionary kid discoveres he is green; his way of thinking, speaking, acting, eating - it has all changed a little. It is not like home, it is not like the new place exactly, it is some mix of the two.
In Sudan, sitting under a tree, in the hot hot sun, I discovered that what I have known for months - I am not Kenyan, but I am not exactly just American anymore either. I dont always agree with the new ideas and things that I am learning and observing, but it is the way of life here. As I debated with people I respect greatly - and once agreed with completely - I was overcome with a crushing sadness that I am alone in ways that I have never been before. It was a feeling of not belonging anywhere.
The US team desperately wanted to give the news to the Sudanese their way, on their timetable - to ensure it was done right. And in the US, that is how it should be done. The Sudanese elders wanted the news to be given - you guessed it! - in their way, on their timetable - again, to ensure it was done right. And in Sudan, that is how it should be done.
Finally, a joint decision was made - we would tell them that they had a bad blood test and more information would follow as it was available.
The town council asked us to meet with the local MSF office to ask if they would aid the community in HIV education. The goal of the council was: first - mass education campaign, followed by, with the help of MSF, making medicines available. All finally resulting in treatment for those affected. I concurred. In retrospect, it probably wasn't incrediably helpful for us to test for a disease that was unknown to the population and also, test a population that had no access to care. A hundred times I have wondered - do I now wish we had never done that first test? Do I wish I now didn't know the problem existed? Or maybe, I wish we'd just done it in a better way.....
Regardless, MSF was not in agreement with our assessment. They were not willing to help with education or treatment, nor were they enthusiastic about us having done the initial testing. I was told by someone at the meeting that MSF has decided not to disclose any positive HIV results to patients due to the cultural and social implications.
So, let me ask you again.
What if I told you that you have a disease? You don't understand what it is, only that I am saying that there is no cure and there is no treatment. You will pass it to your children and your spouse.
Or maybe I don't tell you at all. You come to me because you are sick. I take blood for tests. I give you medicine and tell you to take it. And you do. But the sickness returns.
At present, one of our team members is petitioning organizations to sponser HIV education and treatment in this area of southern Sudan. I am hopeful that somehow God will bring HIV education into this area. As of yet, the area has remained peaceful, but the villagers are worried.
The morning of my departure from Sudan, I walked through the main village compound alone. A man came to me with his 8 year old daughter. I remembered her. She had tested positive for HIV. He tried to speak to me and I could not understand. I tried to turn away gently. He grabbed my arm roughly and turned me back. He spoke urgently but without malice. Another man wandered by. One of our translators. The two spoke for a moment and the translator turned to me and spoke: "The man here wants you to take his daughter out of Sudan. He know she is having sickness and he wants her to have treatment."
I tell you all this because I am haunted. I am haunted by the face of an eight year old girl whose father begged me to take her away from her home to save her. I am haunted by the thought that there may be physicians testing people for a disease and then ignoring an epidemic. Mostly, I am haunted for a people that is war-torn and seeking God's grace - a people that we may not always understand, but need our help on their terms and on their level.
Please be vigilant in your prayer for Southern Sudan; the establishment of independence is only the beginning. I am confident that somewhere there is a group that has the means to launch the kind of education and treatment campaign that is needed in this area - I hope this blog finds its way to them.
"A missionary friend of mine once said,
'Things were simple before I went to Africa.
I knew what Africa's problem was, and I knew the answer.
When I got there and began to know him as a person,
things were no longer simple,'"
Elisabeth Elliot
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