The Hidden Cost of Illness

By December 1, 2020 Uncategorized

You are about to read the story of Arach Christine, a 46-year-old mother of five children, who joined the Village Enterprise program in December 2019. Her story, originally told in Acholi, has been translated into English with minor grammatical edits.

Christine is among 86,000 Ugandans who are diagnosed with tuberculosis annually. Uganda is one of the 30 World Health Organization designated countries with a high burden of tuberculosis infection. Although nearly all public hospitals in Uganda offer tuberculosis medication for free, individuals living with this disease cite the associated non-medical costs as catastrophic.

The combined cost of transportation, food, nutritional supplements, and other non-medical expenditures accounted for the largest share of total disease related costs at 60%. Christine, like many Ugandans living with tuberculosis, struggled to afford the costs associated with hiring a caretaker and the cost of transportation to retrieve her medicine.

This is her story.

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My name is Arach Christine.

My husband died at the hands of Karamojong Cattle Rustlers a long time ago. I have five children. As a single mother with no means to fend for my own life let alone my kids, I decided to go back to the home of my parents. However, my family instead sent me back to my marital home that was inherited by my brother-in-law and whom I was now expected to marry.

After we got married, I gave birth to another child. My new husband battered me. I tried to run away with my children and move back in with my parents, but they had passed away. I reached out to my uncle who refused to take me in saying that since I was married, my duty was to tend to my husband. Disappointed and frustrated, with nowhere to go, I went back to him. 

It was then when my luck worsened.

In 1998, I was diagnosed with tuberculosis. Pregnant with my third child, I was taken to the nearest hospital where I stayed for three months. Nearly 20 years passed and I had two more children with my husband. In January 2019 I was re-diagnosed with tuberculosis and, this time, spent six months at the hospital while my five children were in the care of my mother-in-law. I had no family members to visit and care for me, only surviving on the goodwill of other patient’s caretakers. 

When I was discharged from the hospital, I returned to my village and sought help from the village leaders. The leaders provided me with a compound of land where I could build a hut to live apart from my husband and recover from my disease. My luck was improving, however, I was still unable to earn a sustainable living. I spent every shilling I had on materials to build my hut and to pay any expenses for my children. I could not afford the transportation cost to refill my tuberculosis medication from the hospital in town and often missed pills when the bottle became empty.

My story would remain the same until last year when I enrolled in the Village Enterprise program. This program was the beginning of the end of my troubles. For the first time, I developed friendships with other women where I felt comfortable sharing stories of my life. In return, I heard many touching stories from women whose experiences were similar to mine. I was trained on different business skills and ideas. Most importantly, I learned how to save with a purpose.

With the grant money provided by Village Enterprise, I was able to start a retail business with two other women. Together, we sell produce like bananas, jackfruit and maize meal.  I saved enough money to buy three bags of cement to build the structure of my hut, where I now live with my children. I am now saving up money to buy goats and cows. I hope to make enough money from these animals to provide even more for my children.I no longer had to skip my tuberculosis medication as I was able to borrow money from my business savings group to transport myself to the hospital when my medication ran out. With the money I made from my business, I was able to afford nutritious food which helped in my journey to full recovery. In August of 2020, my doctors told me that I had recovered from tuberculosis and advised me to return in six months to get tested for symptoms of relapse. If not for the grace of my Village Enterprise business savings group, I don’t think I would’ve recovered from this disease. 

I thank Village Enterprise for providing me with the resources to improve my life and help me rewrite my story. 

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