Eight years ago, Brian Cohen, 57, left his endocrinologist’s office disheartened. During the appointment, the doctor repeatedly told him he had type 2 diabetes because he was “fat.”
“I was on the verge of tears,” says Cohen, an analyst from Arlington, Virginia. “I felt everything was futile and it was all my fault.”
The language of diabetes is filled with derogatory words—blood, fasting, dieting, sugar testing, cheating, obesity, exercising—that prompt feelings of dread, guilt, pain, blame and shame.
Although studies on how language affects care for people with diabetes have yet to be published, studies on obesity, show that negative language from health care providers and others can discourage people from returning to medical appointments, can spark binge eating, and can lead to additional weight gain.
“We need to send more positive messages,” says Susan Guzman, PhD, co-founder of the Behavioral Diabetes Institute. She urges health care professionals and others to use “patient centered language that is respectful, empowering, and non-judgmental.”
But the current language around diabetes often sets patients up for failure.
John Zrebiec, director of behavioral health at Joslin Diabetes Center, notes that people with diabetes are often talked to about “diets,” when meal plans or healthy eating might be a preferable choice.
“No one can stay on a diet forever,” says Zreibec. “A healthy eating plan, by contrast, can last a lifetime.“
Other terms, such as blood sugar “testing” also invite the idea of possible defeat.
“What is a test,” asks Zrebiec, “but a chance to fail? Blood glucose testing is all about good, bad, right and wrong,” says Zreibec. “Instead of an indicator on how to treat your diabetes, it becomes an indication of moral integrity.”
Zreibec notes that when glucose testing was originally developed in the '80s, the concept was to “be a kind of compass to help you find direction, but it very quickly turned into a 'test' that you could pass or fail.”
The point was to use your blood sugars to give you a notion of what to do next—increase medication, consume fewer carbohydrates or reduce medication–not as a measure of moral virtue.
Depending on the choice of words or phrases, language can be “demotivating, inaccurate or even harmful,” reports a paper on the language of diabetes published by Diabetes Australia, which explains how language used by health professionals and people with diabetes can make individuals even more frustrated by their condition.
At a recent conference of the American Association of Diabetes Educators, Guzman spoke on the topic with two other experts—Jane K. Dickinson, RN, PhD, CDE program director, Teachers College Columbia University and Melinda Maryniuk, RD, Med, CDE director of Care Programs at Joslin. They urged the group of diabetes educators to be mindful of the way they speak to their patients.
“Use language that is neutral and non-judgmental. Simply state the facts,” advises Maryniuk. “Instead of saying: Your diabetes is not in good control. Say: Your A1C is 8.5 which is above the 7.0 target 7.0 the doctor is looking for I’m concerned about you.”
Words like this convey a caring sentiment and may be more motivating. “Remember many people with diabetes already feel stigmatized and guilty—especially if they are overweight,” says Dickinson.
Becoming aware of the words you choose, can help turn negative messages around. Below are a few suggestions:
#1. Instead of: Bad blood sugars
Rather than punishing yourself for “bad” blood glucose level readings, note that your blood sugars are running high or low. Labeling readings as “bad” suggests that the state of affairs can’t change, but glucose readings are only a marker of where you stand at a point in time.
#2. Instead of: Blood tests, testing
“Checking” or “monitoring” or “self-monitoring” are all preferable to “testing,” notes Diabetes Australia. “Tests imply success or failure and an end result, but people with diabetes need to monitor their blood glucose levels throughout the rest of their lives.”
#3. Instead of: Control (as in, diabetes control, blood glucose control, controlling diabetes)
Substituting the words “manage” or “influencing” for “control” acknowledges that control can be elusive since there are many factors outside your command when it comes to blood sugars. “Trying to achieve ‘control” can lead to guilt, despair and frustration when it can’t be achieved,” notes Diabetes Australia. A better way to look at it is that people with diabetes can “influence” their blood glucose levels, rather than completely control them.
#4. Instead of: Diabetic
Instead, try calling yourself a “person with diabetes” or a “person living with diabetes.” “Diabetic” suggests that the condition is the defining characteristic of your life, while “living with diabetes” emphasizes that you are doing just that.
#5. Instead of: Failure, failing to
Opportunities for failure abound in diabetes: you can fail at dieting, at reaching diabetes goals, at taking medications. Consider replacing failure with “did not,” “has not,” or “does not,” as in “You didn’t take your sugars but you can start tomorrow.”
#6. Instead of: Obese or normal weight
Diabetes Australia recommends substituting “unhealthy” or “healthy weight” for these terms. The difference is between a “trait and a state.” Obesity, a trait, intimates something that is fixed and unchangeable, while a state, like excess or unhealthy weight, suggests something that can be changed.
#7. Instead of: Poor control, good control, well-controlled blood glucose levels
Referring to poor or good control brings a moral judgment to the table – the person with diabetes has once again been good or bad. By calling blood glucose readings “stable” or “optimal” or “within the normal or target range” makes things less personal and “acknowledges that sometimes glucose readings are out of a person’s control,” notes Diabetes Australia.
#8. Instead of: Should not, have to, must, can’t
Instead of finger waging, health professionals, family members and friends can help by avoiding these restrictive phrases. Instead ask questions (“Do you want help when you have a low sugar reading?”) to show concern. The switch grants people with diabetes a sense that they can make decisions about their care instead of feeling like the disease is driving the bus.
For Cohen, a change of doctors and a greater involvement in a diabetes online community has made him more of an active and empowered participant in his care. “When a patient leaves an appointment with a positive attitude,” he says. “They’re going to do much better.”