Diabetes in Real Life

Language matters for people with diabetes

Susan Weiner
Jane K. Dickinson

In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with Jane K. Dickinson, RN, PhD, CDE, about the language used in diabetes care and why it matters.

The words diabetes professionals use make a difference for people with diabetes. How did you become interested in the language of diabetes?

Dickinson: I first became aware of and interested in the impact of words when I was a camp nurse and later the clinical director at diabetes camp. We stopped using the “ic” word (“diabetic”) and “test” back in the early 1990s. I became aware of the widespread labeling of people as their diagnoses in the hospital setting around 1993, and I have been passionate about language ever since. Over the years I have noticed how words affect me — I’ve had type 1 diabetes for over 40 years — and while I can do something about it, I worry about those who may not be able or willing to advocate for themselves.

Why is language we use in health care important?

Dickinson: Studies in other disease states show that language can lead to stigma and can have a negative effect on health behaviors and outcomes. The language around obesity is changing because research found that people are less likely to exercise and make follow-up health care appointments when they hear negative language. Researchers have also demonstrated that words associated with pain can increase stress in hospital patients. We know that diabetes is already stressful and that stress can actually raise blood glucose; therefore, looking into the impact of language on diabetes makes sense. In fact, the words we use in diabetes care could be contributing to diabetes distress, which can lead to paying less attention to diabetes management.

What are some of the words you have identified as being negative?

Dickinson: Words such as “suffer” put people in the victim role. Instead, we can say “living with diabetes.” “Control” is another one — this is a judgment that does nothing to help people. Instead, we can say “diabetes management.” We can focus on blood glucose levels or glycemic goals, rather than control, which is not a measurement. Talking about diabetes tasks and numbers as control can actually make people feel even less in control. “Diabetic” is a label, while “person with diabetes” puts the person first. There are certainly many words that can be hurtful or at least not helpful for people with diabetes — “compliance” and “adherence” are among them — but the most important thing is the messages we are sending as diabetes professionals. By putting the person first, and focusing on their needs (not ours), using words that are consistent with those messages will start to come naturally.

How are professionals and people with diabetes reacting to your work on language?

Dickinson: Very recently there has been more activity around language. People with diabetes are writing blog posts and other articles about it. I am also hearing from professionals that they would like to work on changing the language used in their workplace. Unfortunately, sometimes the emphasis on empowering language is mistaken for “political correctness.” On the contrary, a language movement in diabetes is meant to create lasting change through messages of strength and hope. It is about focusing on strengths and empowering people with diabetes to feel good about themselves, take care of their bodies, and live well with diabetes.

What is being done to change the language of diabetes?

Dickinson: For so many years I thought I was the only one thinking about this, but it turns out that many others are as well! Diabetes Australia published a position statement on language in 2012. The American Association of Diabetes Educators is partnering with the American Diabetes Association to develop a language position statement as well. Team Novo Nordisk conducted a survey on diabetes language and stigma that identified many of the same negative words I mentioned above. Members of the Diabetes Online Community are discussing the impact of language; in fact, I conducted two virtual focus groups recently that showed that language really does matter to people with diabetes. More than 60 people participated in the focus groups and shared their experiences with negative language in the health care setting and in society, in general. People discussed feeling angry, frustrated and tired of the judgment, blame and misinformation. They asked health care professionals to treat them as human beings rather than as a disease or a number and to use words that make them feel like partners in their diabetes care.

My hope is that one day people who are diagnosed with diabetes will never hear words like “diabetic,” “test,” “control,” “suffer” or “compliance/adherence.” Using person-centered, strengths-based and empowerment approaches — and language that is consistent with these approaches — can help us toward this goal.

Disclosure: Dickinson reports no relevant financial disclosures. Weiner reports serving as a clinical adviser to Livongo Health.

Susan Weiner
Jane K. Dickinson

In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with Jane K. Dickinson, RN, PhD, CDE, about the language used in diabetes care and why it matters.

The words diabetes professionals use make a difference for people with diabetes. How did you become interested in the language of diabetes?

Dickinson: I first became aware of and interested in the impact of words when I was a camp nurse and later the clinical director at diabetes camp. We stopped using the “ic” word (“diabetic”) and “test” back in the early 1990s. I became aware of the widespread labeling of people as their diagnoses in the hospital setting around 1993, and I have been passionate about language ever since. Over the years I have noticed how words affect me — I’ve had type 1 diabetes for over 40 years — and while I can do something about it, I worry about those who may not be able or willing to advocate for themselves.

Why is language we use in health care important?

Dickinson: Studies in other disease states show that language can lead to stigma and can have a negative effect on health behaviors and outcomes. The language around obesity is changing because research found that people are less likely to exercise and make follow-up health care appointments when they hear negative language. Researchers have also demonstrated that words associated with pain can increase stress in hospital patients. We know that diabetes is already stressful and that stress can actually raise blood glucose; therefore, looking into the impact of language on diabetes makes sense. In fact, the words we use in diabetes care could be contributing to diabetes distress, which can lead to paying less attention to diabetes management.

What are some of the words you have identified as being negative?

Dickinson: Words such as “suffer” put people in the victim role. Instead, we can say “living with diabetes.” “Control” is another one — this is a judgment that does nothing to help people. Instead, we can say “diabetes management.” We can focus on blood glucose levels or glycemic goals, rather than control, which is not a measurement. Talking about diabetes tasks and numbers as control can actually make people feel even less in control. “Diabetic” is a label, while “person with diabetes” puts the person first. There are certainly many words that can be hurtful or at least not helpful for people with diabetes — “compliance” and “adherence” are among them — but the most important thing is the messages we are sending as diabetes professionals. By putting the person first, and focusing on their needs (not ours), using words that are consistent with those messages will start to come naturally.

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How are professionals and people with diabetes reacting to your work on language?

Dickinson: Very recently there has been more activity around language. People with diabetes are writing blog posts and other articles about it. I am also hearing from professionals that they would like to work on changing the language used in their workplace. Unfortunately, sometimes the emphasis on empowering language is mistaken for “political correctness.” On the contrary, a language movement in diabetes is meant to create lasting change through messages of strength and hope. It is about focusing on strengths and empowering people with diabetes to feel good about themselves, take care of their bodies, and live well with diabetes.

What is being done to change the language of diabetes?

Dickinson: For so many years I thought I was the only one thinking about this, but it turns out that many others are as well! Diabetes Australia published a position statement on language in 2012. The American Association of Diabetes Educators is partnering with the American Diabetes Association to develop a language position statement as well. Team Novo Nordisk conducted a survey on diabetes language and stigma that identified many of the same negative words I mentioned above. Members of the Diabetes Online Community are discussing the impact of language; in fact, I conducted two virtual focus groups recently that showed that language really does matter to people with diabetes. More than 60 people participated in the focus groups and shared their experiences with negative language in the health care setting and in society, in general. People discussed feeling angry, frustrated and tired of the judgment, blame and misinformation. They asked health care professionals to treat them as human beings rather than as a disease or a number and to use words that make them feel like partners in their diabetes care.

My hope is that one day people who are diagnosed with diabetes will never hear words like “diabetic,” “test,” “control,” “suffer” or “compliance/adherence.” Using person-centered, strengths-based and empowerment approaches — and language that is consistent with these approaches — can help us toward this goal.

Disclosure: Dickinson reports no relevant financial disclosures. Weiner reports serving as a clinical adviser to Livongo Health.