Cultural Miscues in Diabetes Care

Photo by Graham Ramsay Ellen Rothman

My nanny’s father is a “road man,” a healer versed in the ancient Navajo traditions and adept at blending them with the pan-Indian traditions of the Native American Church. People wait outside their homes in the evenings to request his services. By day, he works first shift at the local coal mine.

Felicia’s father also has uncontrolled diabetes.

He is highly respected in the community for his healing abilities. He often performs one or two all-night meetings during the weekend and several less complex prayers on weeknights. He believes that the Holy People demand balance among the Navajo people. Health cannot exist without illness. In exchange for healing his patients, he bears their illness in the form of diabetes.

Taking Disease Lightly
In my work at an Indian Health Service clinic on the Navajo Reservation, diabetes is routine. Genetic predisposition combines with a modern diet and sedentary lifestyle to produce devastating disease. Despite improved access to effective treatments, death rates remain stubbornly higher than those in the rest of the country.

Uncontrolled diabetes causes catastrophic complications, such as heart disease, stroke, limb amputation, and blindness. Patients may still feel well with elevated blood sugar even as insidious damage occurs within their bodies. I recently saw a diabetic woman in clinic whose blood sugar was noted to be 540 mg/dL, well above the normal level of 80–120. “I don’t even feel anything when I get to 700,” she boasted. Although I tried to educate her that day, she ignored my entreaties and refused treatment.

Since diabetes has been epidemic across the country, it has remained a persistently difficult disease to manage. The New England Journal of Medicine reported that only 37 percent of adults over 20 were able to achieve ideal control of their diabetes in 2000 (Feb. 9, 2006). On the Navajo Reservation, geographic isolation and cultural barriers compound these challenges.

An Alien Illness
There is no way to explain diabetes within a traditional Navajo construct. Illness does not originate from within the body, but from external forces that cause spiritual imbalance. The idea of a chronic, incurable disease that invariably grows worse over time is foreign. Some Navajo think that their food has been affected by lightning, causing them to be unable to digest it. Others call diabetes the “white man’s disease,” considering it outside the framework of the Navajo world.

Many of our patients find it exceedingly difficult to adhere to the dietary requirements. Some spend months off their medications because they cannot find the time to come in to the clinic. Typically, these patients have not seen a primary care doctor for months or years. Their prescriptions have long since expired, and so they come to the ER for the physician to write them a new one. Although the prescriptions get written, the many other important components of managing a complex chronic illness are neglected. How can we help these people?

Ironically, my nanny’s family is dedicated to protecting her father’s health. A few years ago, he was restricted from lifting heavy objects after he had surgery to correct diabetic eye disease. Although the restriction was probably only intended for a few weeks of healing, even now, if they hear him outside gathering wood or coal in the predawn hours before work, one of the sisters goes out to ensure that he does not exceed his lifting restriction. If he is hungry after work, his daughters rush to prepare his meal, carefully grinding his meat because they were once told that this is healthier for a diabetic. They assiduously avoid adding salt to their table food. Yet on the occasions that I have been to their home, he always has a can of Pepsi in hand.

Felicia’s father has been hospitalized twice in the past six months for serious infections, to which diabetes renders him susceptible. After the first hospitalization, he was referred to our diabetes clinic and started on insulin. A few weeks later, I was at his home and he proudly pulled out his blood sugar diary. All the values were less than 200, and he had also recorded all of his insulin injections. “I feel pretty good,” he told me.

But a few months later, I was back at the house and he had a soda in his hand again. Felicia told me that at his most recent clinic visit, his average blood sugar was found to be 349, a marker that indicates his diabetes is wildly out of control again. Since she raised the subject, I suggested that he change to diet soda.

“Oh no, my dad could never drink diet. But he did quit once for two weeks,” Felicia said.

At some level, Felicia’s family recognizes that the diabetes medication is important. When her father is not feeling well, they rush for the medicine cabinet to find that insulin shot. But they have trouble incorporating insulin into his daily life to protect him from becoming sick in the first place.

Felicia’s family demonstrates the daily challenges that my patients face. It’s neither lack of interest nor lack of knowledge that prevents her father from controlling his diabetes. It’s easy to cut back on salt and heavy lifting, but too hard to eliminate regular soda. It’s easy to remember a shot when he feels ill, but too hard when he feels normal. These are hard lifestyle changes to make, whether in the middle of the city or in the remote mesas of the reservation. We sorely need scientific advances to give us better tools to treat, and hopefully even cure, this devastating disease.

—Ellen Rothman, HMS ’98,
practices in northern Arizona
on the Navajo Reservation.

The names used in this column are pseudonyms, and the opinions expressed are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.

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