Whoever said, “Sticks and stones can hurt my bones but names will never hurt me,” was lying. All of us know hurtful words are damaging, and that’s how most of us get, and feel, attacked. You’re not very likely to be chased by an angry mob hurling stones, but you may find yourself the object of an angry online rant or the subject of office gossip.
Oddly, people can be disrespected by the very institution that’s supposed to provide health and healing. The health care industry. Health professionals are rarely taught, so largely ignorant, that many of the words they use with, and about, patients, words deeply embedded in the health care culture are negative, shaming and disempowering.
Last year the American Diabetes Association and the American Association of Diabetes Educators, with a number of patient advocates, collaborated on a joint paper making a recommendation to change the shaming, blaming language of diabetes.
Jane K. Dickinson, RN, PhD, CDE, Faculty for the online master of science in diabetes education and management program at Teachers College Columbia University, and person with type 1 diabetes, is also this year’s Diabetes Educator of the Year. As such, she’s traveling across the country sharing the importance of removing judgement from the language of diabetes and incorporating positivity and respect to help people thrive.
Jane is a friend so we talked about the language movement. Below, an example of how we use damaging words without realizing.
Riva: What is the language movement in brief terms?
Jane: We’re shining a light on the negative, judgmental and shame-based language and messages pervasive in diabetes. The language movement is a way for health professionals to lead by example and change the way we talk about diabetes and the people who live with it.
Riva: Why is this important?
Jane: We all shape meaning about ourselves and our world from the messages we get; they influence our thoughts and actions. When people with diabetes hear negative, judgmental, and shaming, blaming messages, many feel bad about themselves. They can get discouraged and may give up trying to take care of themselves.
Instead, we can use judgment-free, positive language to help people with diabetes see how strong and capable they are. Through strengths-based, person-centered language, we look at what people do well and encourage them. Positive messages also introduce hope and hope is critical to thrive in life.
Riva: Can you give me some examples?
Jane: Positive messages are ones like, “I see you’re working really hard to take your medicines,” or “You just started taking insulin. Do you have any questions?” instead of saying people are “compliant,” “adherent,” or “in control of their diabetes.” These words aren’t just spoken, they’re stamped on patient charts and appear in headlines in professional publications.
We also talk about “testing” your blood glucose (sugar), so blood glucose becomes “good” and “bad.” We say “glycemic control” when we don’t even know what control is, and, “control” implies success or failure. It’s more helpful and effective to be factual. We could say instead “glycemic variability.” And let’s not pair “victim,” “suffer,” and “burdened” with diabetes. Someone has or lives with diabetes.
Riva: Is there research to support the language movement?
Jane: Yes. Research shows messages people receive even at diagnosis can impact their self-management. Many people with diabetes feel stigma and we know that stigma is worsened by disempowering language. Labels also influence behavior. “Expectancy theory” tells us people who are labeled “non-compliant” may live up to that label by not taking care of themselves. They may also be less likely to receive advanced treatment from their health care providers.
Riva: Are you hopeful we can reverse the situation?
Jane: Very. When I point out our language to diabetes educators they see its impact and why it’s important to shift to more empowering language.
I’d ask anyone who works in health care to listen to, and pay attention to, the words and messages you use about diabetes and the people who live with it.
If you have diabetes, listen to how you talk about yourself. We can teach by example and bring judgment-free and positive messages into diabetes to help people heal emotionally as well as physically.