As health care professionals (HCPs), what we know, do, and say has an impact on people. People with diabetes come to us when they are vulnerable, and our knowledge, actions, and words give us the power to help them overcome their fear and learn what they need to take care of themselves. Unfortunately, the words used in diabetes care often lead to shame instead.
When HCPs interact with people who are diagnosed with diabetes, we often use words such as “diabetic,” “should,” “test,” “control,” “noncompliant,” and “morbidly obese.” Although these words have been part of the health care lexicon for years, many people with diabetes find them negative and judgmental and often shut down when they hear them. Negative words are not helping people better manage their disease and may even be hurting them.
People with diabetes experience abundant guilt, shame, and blame. Society in general, and HCPs in particular, often refer to diabetes as a “lifestyle disease.” This alone sends a message of judgment. The literature shows that words make a difference in health (1), and some groups have already taken the initiative in changing the language used in specific health-related conditions. It is time for diabetes care professionals to do the same.
The messages we send in health care can have an impact on patient-provider communication and, ultimately, relationships. Through messages that empower people with diabetes, we can build trust and rapport. This increases the likelihood that patients will communicate openly and honestly with us and listen to our suggestions.
A language movement is not a new concept. Psychologists, health professionals, and even the lay community have been discussing the language of health care for more than half a century. Diabetes Australia published a position statement on language in diabetes (2); the American Diabetes Association stressed the need for patient-centered care and person-centered language in its Standards of Medical Care in Diabetes—2016, stating that the word “diabetic” should no longer be used when referring to individuals with diabetes (3); the Obesity Society published a statement regarding the language of obesity (4) and offers related online resources (http://www.uconnruddcenter.org/weight-bias-stigma); and the disability community has also documented its recommendations for using People First Language (http://www.cdc.gov/ncbddd/disabilityandhealth/pdf/disabilityposter_photos.pdf).
People First Language is an approach that is gaining momentum. In diabetes care, this means avoiding words that judge or label and sending messages of strength and hope. Putting the person first helps us truly focus on and empower individuals; it sends the message that we think the person is more important than the disease or the numbers used to gauge its control. As HCPs, we work to help people with diabetes take the best possible care of themselves, make healthy choices, experience positive health outcomes, and live full and productive lives. People First Language messages can promote those priorities.
One way to put people first is by saying “person with diabetes” or “woman who has diabetes” or “man living with diabetes” rather than “diabetic person” or “a diabetic.” The words we choose form the messages that we send to people with diabetes. Another way we can send messages that empower and encourage is by using strengths-based language—words that focus on people’s strengths rather than their weaknesses. For example, instead of labeling someone as having “unrealistic” goals, a positive message can be conveyed by saying the person has “high expectations for self-management.” Instead of describing a patient as “suffering from diabetes,” a more strengths-based way of framing this would be to describe the patient as “living with diabetes.”
We can also focus on patients’ physiology—what is happening in their body—rather than conveying judgments about what they are doing right or wrong. For example, we could say, “Mrs. Lee is experiencing hyperglycemia; today’s A1C result is 9.2%” instead of “Mrs. Lee has poorly controlled diabetes; her numbers are too high.”
“Control” is another word that people with diabetes hear a lot. A patient who was afraid of hypoglycemia tended to keep her blood glucose levels high because she felt safer that way. Her obstetrician scolded her and threatened that if she did not get her glucose under “good enough control,” she may not be able to deliver her baby at the local hospital. Asking this patient to keep her blood glucose in a lower range actually took away her sense of control, so this demand sent a mixed message. It is virtually impossible to truly control diabetes; therefore, this is a judgmental term that is out of place in diabetes care.
There has long been discussion about the inappropriateness of the terms “adherence” and “compliance” when discussing or writing about people with diabetes (5). Compliance and adherence are judgmental terms that refer to doing what someone else wants. Diabetes, on the other hand, is a chronic disease that requires daily tasks and choices. That is self-management, not compliance. Instead, we can focus on the person’s strengths: What is working? What is the person currently able to do, and how can we build on that?
Research on language related to weight has revealed that words matter. Study participants reported that “morbidly obese,” “fat,” and “obese” are the most undesirable, stigmatizing, and blaming terms that HCPs use (6). Hearing these words can have negative effects such as reinforcing unhealthy eating habits and leading people to avoid future health care visits or find a new HCP. Participants reported feeling less stigmatized when their condition is described as “unhealthy weight” or “having extra weight” (rather than being obese).
When people with diabetes check their blood glucose, they are gathering information with which to make decisions. Will they take insulin? Will they eat something? Is it safe to exercise? Did the last task they engaged in pay off? This is not a “test,” and using the word “test” in this context implies pass/fail or good/bad and, therefore, more judgment. People with diabetes often translate good/bad numbers to being a good/bad person. When we think about numbers as information and blood glucose monitoring as “checking,” rather than “testing,” we empower people to take care of themselves.
A language movement involves awareness and willingness to change. It is not about political correctness (7). People with diabetes are more informed and involved in their care than ever before. They are demanding a new approach from their HCPs. Some people worry that the currently used negative words will simply be replaced with another set of negative words. But if we take a look at our messages and align them with an empowering approach, we can prevent this from happening. One argument against changing our language is that it takes more time to use person-centered phrases. However, those who have already made the transition (or are working on it) have found that, with practice, it becomes second nature.
To change the language of diabetes, we first need to look at how we approach people and the messages we send. By considering people with diabetes as partners in diabetes care and by recognizing that it is their body and their disease, we can choose words that send messages consistent with this mindset.
Following are some suggestions for ways you can join the People First Language movement:
Think about your own language. Become aware of the negative words or phrases you use.
Listen to your colleagues. Have a discussion with them about words and ways everyone can contribute to creating a more positive and empowering environment.
Teach your students. Many of us are in positions where we interact with students or trainees. Make sure they get this message. Reinforce person-centered language when you hear it.
Review education materials such as slides and handouts. Make sure the spoken and written messages you send are person-centered and strengths-based.
Let your patients know you are trying. Make your efforts public by announcing it in a newsletter or waiting room flyer. Letting people know you are aware and trying harder can do a lot to build relationships.
We tend to say and write the words we hear and read all around us, and the words of health care, and more specifically diabetes care, have become ingrained. But in this age of patient-centered care, it is time to rethink the messages we send and align them with the type of care we wish to give. Several suggestions for words and phrases that are strengths-based, person-centered, and empowering and can be substituted for the words commonly used in diabetes care are listed in Table 1.
Duality of Interest
No potential conflicts of interest relevant to this article were reported.