Ancient Myths and Fears Persist : Leper Lives a Lie, Tells Family It’s Cancer

She told her family that she has cancer; she would rather they believe the lie. She cannot not tell them that she has Hansen’s disease--leprosy.

“If I tell them I have the disease, I don’t know how they would act,” she said. “Suppose they are scared of me? I could not take that. I would be real hurt.”

She is 32, a modern example of the ancient myth and fear that persist about this disease. Call her Li. Now under treatment, she cannot transmit the disease to others. Her only disability is the thick, calloused skin on her face and ears. She is awaiting surgery that will lessen the scars.

This rough skin is at once outshone by her lively, dark eyes and a rebounding cheer that seems to belie her fear.

Li is Cambodian, and memories of the outcast lepers in her homeland frighten her still.

“I don’t want to say the word” for the disease in her native Khmer language, she explains with a sudden nervousness. She will not say the Khmer word for a reporter. “When I say I have this disease, I always talk in English. It scares me. I cannot stand the word.”

Li’s is typical of the approximately 300 cases of Hansen’s disease diagnosed annually in the United States. Most of the patients are immigrants who may have unknowingly harbored the bacteria for as long as 10 years.

Li twice fled into Thailand before coming to California in 1981. A year later she noticed small, itchy bumps on her face.

“I don’t know when the disease started. They sent me to three doctors before they found out what it was,” she said.

“I cried and cried and cried and cried. I could not stop. I thought, ‘Oh my God, my life is finished.’ I didn’t want my family to know. I went to the doctor myself.”

She began drug therapy, but when a reaction to the medication worsened her condition, she came to the Hansen’s Disease Center. That was seven years ago. She remains here, having made a life within the old white buildings and the maze of covered corridors that offer shade in the Louisiana heat.

“I like it in here. In here, it is safe because everyone is the same.” Outside, she said, “people are staring at you, and ask you all the questions. You don’t know what to answer. You really feel bad. You make up stories.”

“I don’t want to stay here forever. You have no future in here,” she acknowledged. “But in here, well, it is safe.”