Ask the average healthcare worker about the biggest problem in diabetes care today and he or she will probably tell you that it's getting patients to "control" their blood sugar levels.
The concept of control is rampant in healthcare. With puffed chests and reassuring certainty, the medical establishment regularly touts, "She's got her cancer under control," or "He's learned how to control his Tourette's syndrome."
But what most people don't realize is how the concept of control is unusually emphasized in the diabetes community. The medical establishment has gone so far as to create a new definition for the word. When doctors ask someone with diabetes, "Are you in control?," they mean, "Are your blood sugars balanced?" and "Are you following the doctor's orders?"
Most people are also unaware of the treatment that people with diabetes receive when their blood sugar levels are "out of control." It's the dirty little secret that nobody wants to talk about. It's the thing that medical professionals don't want to admit. People with diabetes of all ages, from all walks of life, are regularly reprimanded, shamed and degraded by healthcare professionals when they don't meet medical standards for normal blood glucose levels.
One adult patient described the experience of being wrongly accused of "noncompliance": "He kept bawling me out, telling me that I wasn't minding him, and I knew that I was. He told me right then and there, 'You're just plain not minding me.' And I said, 'I know better -- I am.' "
Diabetes educator Maureen Anthony describes the typical reaction she receives from diabetes patients: "When I enter a patient's room and announce that I am the diabetes nurse, they actually cower like whipped puppies."
Daryn Stier, a psychotherapist with Type 1 diabetes, explains how many diabetes patients have gotten to the point where they simply avoid their doctors: "I've talked to countless people with diabetes. When they have high blood sugar numbers, they don't go see their doctor. They expect to be told off . . . or feel like a failure in some kind of way. And I think it's an unfortunate relationship that exists between the medical establishment and person with diabetes."
What's driving all of this? How did we get to the point where doctors have come to view diabetics as errant children in need of a good spanking while patients are scrambling to hide their report cards so that they don't get the belt?
Disability writer Lennard Davis would say it all started during the industrial revolution. Davis asserts that it was then that the body came to be seen as an extension of the factory machine, which led to the idea that there is a mechanical perfection within the human body.
Yet, this notion that our bodies are machines that can be perfectly controlled is blatantly discredited in the case of diabetes. San Francisco resident Jesse Foster, who has lived with Type 1 diabetes for 40 years, explains, "Even to this day, diabetes is just a difficult disease. You try to do all the right things, and then you kind of go . . . but how come [my blood sugar is] 250 or 260?"
What's ironic is that healthcare professionals readily acknowledge that there are a multitude of factors that impact a blood sugar levels -- emotions, stress, illness, hormones, insulin absorption, metabolism, etc. Yet, there's almost always an assumption that if one's blood sugars are not "in control," it's because the person is ignorant, incompetent or "noncompliant."
Now, what about all of the healthcare professionals who are reading this and tearing their hair out saying: "People have no idea what we have to deal with. You try getting the average couch potato to start exercising and to cut down on their Ben & Jerry's. For every person with diabetes who is diligent about their care, there are 10 others who aren't. So yeah, we'll try anything to get patients to break out of their denial and start dealing with their condition."
Yes, it's true, there are many people with diabetes who aren't practicing optimal care and some who aren't taking care of their conditions at all. Although there may be valid reasons for why this mind-set has developed, it's clearly created a serious problem in the diabetes community that's interfering with diabetes care.
Diabetes psychologist Barbara Anderson explains how it's more productive to be honest with diabetes patients about the limits of control, "You have to be able to work with somebody to help them always strive to getting blood sugars in the target range but we can't blame them for high blood-sugar numbers. . . . Because it perpetuates the myth that the patient can achieve 100% control over blood sugars and that's not true. And once you can join with the patient and meet around that truth . . . then you really have a strong partnership between a provider and a patient."
Meeting around this truth will not eliminate the challenge of getting people to care for their diabetes, but it's an important step in helping patients deal with the reality of their conditions. For while we may be able to influence our health, ultimately we are not "in control." That's a hard truth for all of us to face.
* Bernstein is a psychologist in Oakland, specializing in chronic illness and disability issues. She's producing a documentary about diabetes. Contact her at www.bloodandhoney.org. To be notified about the next free "Taking 'Control' Out of Diabetes" talk, sponsored by the Juvenile Diabetes Research Foundation, e-mail firstname.lastname@example.org.
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