Perceived Stigma of Leprosy Patients in Rural Tanzania

Doing medical work in Africa has always been one my life-long goals. The health disparities that exist between Tanzania and the United States have been particularly appalling for me. I have always had a desire to do international medical work to try to narrow the great “epidemiological divide” that exists between countries. Living in a rural village in Tanzania for one month was the most life-changing experience I have ever had, and I know that I will never forget the lessons I learned of compassion and strength. The people of Tanzania are the kindest, most hospitable people I have ever met and I felt privileged to be able to work with them.

I spent most of my time in Tanzania working at a leprosy camp with patients who had been stigmatized throughout the entire course of their illness and were now left with severe disabilities. I recruited 28 leprosy patients to participate in a face-to-face interview, which was based on a 40-item questionnaire. A native speaker of Luo assisted in translation each question. The questionnaire was divided into six areas: (1) Demographics, (2) Family Relationships, (3) Vocational Condition, (4) Social Interaction, (5) Self-Esteem, (6) Treatment & Health Care. This survey allowed me to measure the perceived stigma of leprosy patients and how it impacts different aspects of their life. For example, a 26-year-old leprosy patient shared his struggle with getting leprosy in the second grade and being taken out of school. Because he was late in receiving treatment, he has lost both of his hands. He told me that he has often thought there is no use in living and even tried to hang himself once since he will not be able to make a living or find a wife. Another patient was thrown out of his home when he first showed signs of leprosy. His family forced him to live outside about 30 feet away from their home. They would not touch him and would not allow him to eat out of the same pot of food. He looked into my eyes and told me that if it were not for this hospital, he would be “lying dead in the bushes.” He now lives in the leprosy camp and no one from his family has visited him for the past 40 years. One young female patient described her experience with leprosy. She said that she saw the patches on her skin at a very young age. When her parents saw them, they traveled to the hospital to drop her off. They told her to tell the doctors that she has “no mother and no father” and demanded that she never return home. She has been living in the camp for 15 years and is worried about how she will survive when she is old since no one will marry her and she will not be able to have children to take care of her in the future. She looked at me with tears in her eyes saying that she will probably resort to begging to survive.

The leprosy patients had suffered a great deal throughout their illness. Most were stigmatized because of the visible patches that appeared on their body. Some were kicked out of their homes, lost their friends, and discarded by society. Despite all of this, they showed a degree of strength and kindness that I had never experienced. They were so happy when I would shake their hands without fear. I will never forget their warm embrace and tears at seeing the pictures I took of them. Or their excitement at receiving sunglasses and making sure to show me that they were wearing them every time I visited the camp.

Instead of coming to the hospital, many of the leprosy patients initially turned to “witch doctors” or traditional healers for treatment of their condition. They were told that they were bewitched due to another person’s jealousy. The treatments they received consisted mostly of herbs and powders, which did not improve the symptoms. Unfortunately, by first seeking treatment from the witch doctors, these patients delayed getting treatment from the hospital. This delay resulted in severe nerve damage, which led to the amputation of their limbs. This situation is common and is extremely frustrating for the physicians since leprosy is a curable disease. Had these patients come to the hospital earlier, they would not have to live with disabilities for the rest of their lives. It is difficult to practice humanistic medicine in this setting because there is a constant battle between modern medicine and traditional medicine, which often results in the suffering of the patient. Learning about these situations allowed me to understand the cultural context of medicine and the barriers that I will face as a physician.

Fortunately, the WHO has passed a resolution to eradicate leprosy. Therefore, the leprosy patients are all treated for free, which allows the physicians to provide the best treatment and care, and truly practice humanistic medicine. In addition, if the patients have nowhere to go, the hospital has provided the patients a permanent housing location (known as the leprosy camp). Many of the patients told me that if the leprosy camp did not exist, they would have starved to death on the street alone. In the camp, the patients are able to talk about their feelings with people that understand them.

In the village of Shirati, the average income is $1/day. Almost everyone is either a fisherman or a farmer. These two occupations are almost the only way to make a living. Nearly all of the leprosy patients have at least an amputated limb or fingers. Therefore, they have lost their jobs and have no way to make money and be self-sufficient. The patients become depressed and feel useless, which makes it very difficult to practice humanistic medicine since the physicians have a hard time treating the body and the soul. However, the hospital has come up with an interesting solution to this issue. They have provided the leprosy patients with tools to make mats and other crafts in order to make some money. This allows the patients to be self-sufficient and gives them confidence, which improves their overall well-being.