Retire Negative Language Associated With Diabetes
I had been living with diabetes for almost 15 years when I stopped using the word “diabetic.” I’m a person first, I realized. I’m a wife, mother, friend, nurse, and educator who happens to have type 1 diabetes—not a diabetic. I also realized that blood glucose monitoring is not a “test.” That implies good/bad, pass/fail, or some other form of judgment, but checking my blood glucose is merely a way to gather information to make the next decision in my diabetes self-management.
The words we hear, read, and use to describe ourselves, our health—our diabetes—make a difference. Words, of course, are an unavoidable part of communicating, and we create meaning from them based on how we interpret them. Too often, people with diabetes are on the receiving end of language that is judgmental. Words such as “uncontrolled,” “noncompliant,” and even “should” focus on our weaknesses, or what we’re doing wrong. The opposite of that—what’s known as strengths-based language—focuses on what we’re doing well.
Research suggests that the use of empowering, strengths-based language when talking to or about people with diabetes can have a positive impact on the way people with diabetes manage their disease on a daily basis. A study published in the May 2017 issue of Diabetes Research and Clinical Practice, for example, suggests that a health care provider’s encouraging words helped people newly diagnosed with type 2 diabetes engage in better self-care.
The self-care aspect is key. People with diabetes aren’t simply following doctor’s orders—they’re making care decisions daily. Words such as “compliance” and “adherence” are connected to someone else’s orders and don’t make sense in a disease that’s focused on personal choices. I prefer words such as “informed” and “engaged” to describe people with diabetes. Those reflect a positive patient-provider relationship, the hallmark of which is effective communication.
After all, are you going to continue seeing a health care provider who uses guilt-inducing words such as “poorly controlled” or “noncompliant”? Probably not, if my experience as a certified diabetes educator is any indication. Patients tell me that they had been hesitant to set up an appointment because of the way other health care professionals had spoken to them in the past. A study of mine, published in the winter 2018 issue of Diabetes Spectrum, supports that: Adults who have diabetes or help care for someone with diabetes reported that negative language fuels fear and anxiety by making them feel judged, blamed, and shamed. These feelings could impair their desire to seek follow-up care.
Changing the Conversation
A few years ago, representatives from the American Diabetes Association and the American Association of Diabetes Educators decided a change was in order. We recognized a need to make it official: The language of diabetes makes a difference. We need to be aware of it, and we need to change it. Based on research and our combined clinical experience, we made a case for using language that is nonjudgmental, free from stigma, strengths-based, and that fosters collaboration between people with diabetes and their health care providers. Our goal with what we dubbed the “language statement”—published in the December 2017 issues of Diabetes Care and The Diabetes Educator—was to raise awareness about the power words have to elevate or destroy. We’re still early in the process of effecting change, but my hope is that replacing negative words with positive ones will inspire people with diabetes to be more engaged in their daily care and that it will change the way they view living with this disease.
It certainly has for me. When I’m asked how long I have “suffered with diabetes,” for instance, I respond by saying that I don’t “suffer” from diabetes. I make choices, perform daily tasks (most of the time), and live with diabetes.
Dropping words that judge, shame, or label people with diabetes and replacing them with positive, strengths-based language sends a powerful message of hope. Here’s a cheat sheet of the biggest offenders, along with simple swaps.
|Diabetic||Person with diabetes|
|Unrealistic goals||High expectations for self-management|
|Suffering from diabetes||Living with diabetes|
|Good/bad/poor levels||Target levels|
|Compliance or adherence||Engagement|
Jane K. Dickinson, RN, PhD, CDE, is program director and faculty of the online Master of Science in Diabetes Education and Management program at Teachers College Columbia University and lives and works as a certified diabetes educator in Colorado. She has type 1 diabetes.