It’s easy to confuse literacy, the ability to understand written language, with health literacy, the ability to understand health information. We think the literate will, of course, be health literate. This is not necessarily the case.
My patient, Anna, was an attorney. She supported herself and her family nicely with her knowledge of the law and an outstanding command of the English language. When it came to health information, she just did not get it.
Anna was a Type 2 diabetic who was barely able to take her medication as prescribed. She almost never tested. Her routine was erratic: She vacillated between near-starvation and compulsive overeating; from sedentary to active and back again. Her A1C levels and ‘inappropriate’ responses were legendary. Anna had burned her way through most of the other providers in our practice when she came to see me. Anna needed to start on insulin. It was thought that ultra long-acting glargine would be best under the circumstances but Anna refused. Many nurses & physicians had tried to educate the patient about her disease. The soft approach, objective reasoning, authoritarian style, & structured training modules had all failed. Anna’s response to each attempt, ‘I’m not doing that.’ So when she came to see me, there wasn’t much left to try. Except for the Stages of Change, Prochaska’s Transtheoretical Model of Health Behavior Change.
Anna and I sat and talked, not just about her health. On her second visit, I asked her if there was anything she didn’t like about being an uncontrolled diabetic. She had plenty to say. Over time, she talked about her intense fear of complications, the feelings of rejection, self-loathing, and hopelessness. One day Anna told me about her grandmother.
Anna never knew her father; and her mother was not equipped to care for her and her younger sister, so they lived with their grandmother. Anna had some wonderful memories of the woman who must have loved the two little girls dearly. Anna’s grandmother took insulin for her diabetes. One day, she was not feeling well and went to the emergency room. Anna and her sister, aged 8 and 6, went with her, as they went everywhere together. The doctor in the emergency room said the patient’s blood sugar was too high and ordered regular insulin, without waiting for the blood test to come back from the lab. A student argued with the doctor saying that her blood sugar was probably low and to give her juice and wait for the lab test. The doctor won the argument, Anna’s grandmother received regular insulin, and died. In the emergency room. In front of the two little girls who depended on her for everything.
After hearing this story, it seemed clear to me that Anna’s anxiety was interfering with her health literacy and, later health behaviors. So, I directed my resources at the anxiety.
We first talked about the glucometer, which was science-fiction when Anna’s grandmother died. About how technology makes it possible to know ones blood sugar every minute of every day. We talked about moderation, fun ways to exercise, and how it was possible to eat well while limiting carbs to 45 g per meal. The last thing we talked about was insulin. The word ‘insulin’ evoked the worst loss Anna had ever experienced. The harbinger of a horrible time for her and her sister. But, with further discussion, she was able to learn about long-acting insulins that are unlikely to cause sudden hypoglycemia and much safer than the regular insulin of the 20th Century.
With a lot of support, in an environment of positive regard, Anna was able to pull it all together. She established a proper routine of diet, medication, and exercise for herself and is sticking with it. She is still anxious, but able to cope with her anxiety. With every day that she succeeds, her self-esteem grows. The last time I saw Anna, her HgBA1C was 7.1 and she was dating a colleague 5 years younger than herself.
Nothing succeeds like success…