And what have I gained by sharing my story? The ability to see beyond it.
A review by David Porta
We are made of stories. Stories help us understand and cope with our life struggles, and by sharing those stories, we make universal the experiences they recount. It may be because of that, that Alan L. Graber, an endocrinologist who has been practicing for more than 20 years, with Anne W. Brown and Kathleen Wolff, certified diabetes nurse practitioners, compiled stories from people having diabetes and from those dealing with it by being family and friends as well as providers caring for those patients.
Many people broadly consider disease and illness practically synonyms. However, their specific meanings bring apart greatly different points of view: disease, as the medical understanding of a health disturbance, an alteration in biological structure or functioning while illness would describe the sick person’s perception of the disease, the forms of distress caused by the disease processes (Kleinman, 1988; Ofri, 2011). Illness has also a meaning in a different sense. For in the context of a chronic disorder, acting like a sponge, illness soaks up personal and social significance from the world of the sick person. Unlike cultural meanings of illness that carry significance to the sick person, this intimate type of meaning transfers vital significance from the person’s life to the illness experience (Kleinman, 1988). Moreover, Kleinman (1988) considers sickness as the visioning of the disease in its generic sense across a population in relation to social forces.
Here is where the particular beauty and interest of Graber’s book falls: in its offering the struggles of diabetes from several perspectives, all of them affected in their own way, directly or tangentially, by it.
At the University of Southern California, Dr. Jorge Mestman told me, “Steve, don’t think of diabetes as a disease. Think of it as a condition that you live with. I bet that if you follow your diet, get regular medical care, exercise, and don’t smoke, you will be far healthier than most of your friends.” That simple message – diabetes as a condition and not a disease – has stayed with me for more than thirty years, and Dr. Mestman was right!
Steven G. Gabbe, MD
The book is arranged in four sections, each of them devoted to a particular point of view: the patient’s view (illness), the family member’s view (Illness), the society’s view (sickness), and the last one on the relationship doctor-patient as they struggle to “control” diabetes (disease/illness). In presenting the most common diabetes problems: diabetic ketoacidosis (DKA), gestational diabetes (GDA), latent autoimmune disease of adults (LADA), and the history of diabetes control: Insulin pumps, the authors illustrate each section with different personal stories. The end of each chapter has a brief fact explanation pertinent to the presented story, providing the reader with a sense of continuum in the diabetes narrative. The book can also work as a guide to diabetes as at the end it contains a notes’ section and a glossary of specific diabetes terminology as well as internet resources and a reader’s guide to topics, therefore providing a nice sense of completion.
Hoping they can be as enlightening to you as they have been for me, I would like to reproduce here some statements from Graber’s book I found particularly interesting as they illustrate the struggles of those who suffer from it or care for them. I arranged them by subject.
HISTORY OF DIABETES CONTROL:
I came from a different world of diabetes. I tested my urine before blood sugar monitoring was available, and I used the old insulins. The need to eat at specific times was so incredibly annoying. Having to eat the same amount of carbs at lunch every day was crazy – so unnatural. It went against the normal flow of daily life. When we got blood glucose meters, I thought it was the greatest gift. Then we got better types of insulins which were more predictable and decreased the constant fear of a low blood sugar. Finally, the insulin pump has been my ticket to freedom. I can choose when to eat and the content of my meals. I can control high blood sugar quickly. Blood glucose monitoring and the pump have given me the opportunity to be normal.
My parents, brothers, husband, and kids never say. ‘You shouldn’t do that; you shouldn’t eat that.’ If I get that from anyone, it drives me insane. I know what I have to do; no one has to tell me. If my blood sugar is low, my husband or my children will get my meter and ask if I want to test my blood sugar, or they’ll offer to get me some glucose tablets. That’s support.
People in insurance companies are paid bonuses for cost containment. Their mission is to make a profit; I understand that. If what they say is not in writing in your plan, question it and make them verify, in writing, that whatever they’re telling you is true. They may be just making it up, or somebody way down in the chain may tell you something just to make you walk away. (…) I am one of several thousand people who call that insurance company daily. The people are just doing their job as they have been instructed. When you are trying to get something, the more constructive noise you can make convinces them you are someone who knows his stuff, who can’t just be pushed around like everyone else. That, with documentation, makes the difference.
A growing portion of patients report that they cannot schedule timely appointments with their physicians, and emergency departments are overflowing with patients who do not have access to primary care. At the same time, primary care physicians are expressing frustration that the knowledge and skills they are expected to master exceed the limits of human capability, and fewer U.S. medical students are choosing careers in primary care (family practice, general internal medicine, and general pediatrics).
Diabetes Control and Complications Trial (DCCT), a land-mark ten-year study at multiple medical centers, involved more than a thousand patients with type 1 diabetes. (…) The study demonstrated that there was a real gap between what the typical patient with diabetes did and what it really took to achieve adequate control and prevent complications.
I am the physician on them medical team. Could at least part of the problem be related to ineffective communication provided by us, the clinicians – or to some other inadequacy in his medical care? Have we failed to recognize something that could motivate the patient? Have we probed deeply enough? Have we spent enough time with the patient to understand more than a cursory review of his history and lab work? Could we search more creatively for something that works? Have we cared enough? (…) From the patient’s perspective, he is already doing a lot to control his diabetes. Is it all his fault?
He said he wanted more “intensive care” for diabetes. Perhaps his notion of “intensive care” was that someone would take care of him intensively. Was he looking for a doctor to take care of him, rather than instruction and empowerment to take care of himself?
- Graber, A.L., Brown, A.W., Wolff, K.W. 2010. A life of control: Stories of Living with Diabetes. Vanderbilt University Press. Nashville, Tennessee. xviii, 190 pp.
- Kleinman, A. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books, New York.
- Ofri, D. 2011. Medicine in Translation: Journeys with my Patients. Beacon Press, Boston, 251 pp.