To Hell with Diabetes

Nikki developed diabetes at age fifteen. She related, "It was OK at first, but as I got older and started going out, I didn't want to test my blood sugar or take insulin—it was inconvenient. I was the only teenager I knew who had diabetes. I felt fine physically, but I cried a lot. Why did it happen to me? I wasn't depressed, I was angry. If I could have given it to someone, I would have."

In her high school courses, she made all As and Bs. Her parents were both professionals in the field of education, and she stated, "They didn't want to see a C. I did my homework. I was a cheerleader for two years. I had the lead female part in the senior play. Teenagers rebel about everything, but I wasn't rebellious. Sometimes I just wanted to give up, forget about school, forget about going out, forget about diabetes." And that's exactly what she did.

Between the ages of sixteen and twenty-one, throughout high school and the first two years of college, she was hospitalized at least once a year for diabetic ketoacidosis (DKA). The major acute complication of type 1 diabetes, DKA is characterized by vomiting, dehydration, and eventually coma and death. Sometimes it is the initial manifestation of type 1 diabetes, occurring before the patient or family realizes that diabetes is present. In individuals with established diabetes, an infection or other acute illness can precipitate DKA, but when it occurs repeatedly, omission of insulin is usually the cause.

Why would an intelligent young woman repeatedly quit taking her insulin injections, knowing that she would end up in the hospital and might even die? We held a medical conference to discuss our difficulties in caring for patients like Nikki, most of whom were young women. The doctors and nurses who attended the conference concluded that in most cases, the patients must have intentionally omitted their insulin injections, although few admitted it. One attendee quoted a patient who had acknowledged, "I didn't take my insulin shots after arguments with my mother, my boyfriend, and a girl at work. I knew I would get sick and start vomiting in a few hours, and even if I lost consciousness, someone would take me to the emergency room, and they'd put me in the hospital." The patient understood her disease perfectly and knew that only she had control over her insulin injections. She knew that she could allow the development of DKA whenever she chose to, and that no hospital could refuse to treat a readily curable acute medical emergency.

When her mother had suggested that she see a psychologist, Nikki had replied, "If you make me go, I'll just sit there and not say anything." Then, at age twenty-one, she didn't take her insulin for a month. She told me that she had said to herself, To hell with diabetes. I was free of insulin, free of sticking my finger, free of anything negative from diabetes. I was determined that nothing would happen to me." She stated that she had had the usual symptoms of diabetes—thirst, drinking lots of water, tiredness, and the loss of thirty-five pounds—but she had continued to function and thought her body had adjusted to high blood sugar.

Finally, one day she got sick at her boyfriend's house; she couldn't get her breath and felt she was going to pass out. "I told him to call my dad, not my mom. Momma would give it to me straight, and I didn't want to hear anything straight. I wanted it sugarcoated." By the time she was admitted to the hospital with severe DKA, she was in a coma.

Every medical student knows that if DKA is not treated, death can occur. Since the condition results from insulin deficiency, the basis of treatment is relatively straightforward: provide insulin and restore the several liters of fluid that have been lost. During the previous generation of medical students, a popular professor at Vanderbilt had a dramatic way of teaching his first-year physiology students about DKA. He would divide the class into teams of four students and issue each team a laboratory rat. Then he would instruct the students to surgically remove the pancreas from their rat. Without a pancreas, the rat would lack insulin, developing DKA and dying within a day or so unless it received treatment. He taught the students to monitor the level of sugar and other chemicals in blood drawn from the rat's tail. The students would deliver insulin and fluids to the rat, trying to cure the DKA and keep the rat alive. This was the students' first opportunity to stay up all night at the bedside and try to save a life. Despite their best efforts, some of the rats died, but those teams of students who understood the abnormal physiology and its treatment succeeded in keeping their rat alive for several days, finally ending the process because they were exhausted. They could boast to their classmates that they were destined to be great rat doctors.

Nikki received excellent medical treatment in the hospital, and the DKA resolved, though she remained in a coma for twenty hours. When she finally regained consciousness, she was frightened. "The coma was something the doctors had warned me about. If I went into a coma again, it might not be for twenty hours, it might be for twenty days. I thought it was time for me to straighten up."

Nikki was referred to a clinical psychologist. This time she said, "OK, I'll go, but if I don't get...