Stigma is a strange and unspoken side effect of living with diabetes. People make generalizations about people with diabetes (PWD) and their lives, casting all kinds of aspersions and adding an unnecessary hardship to life with diabetes. (It’s one thing to have to insulin, monitor blood sugars, and worry about your future health, but it’s entirely another thing to add the weight of guilt and judgment to that journey. File it all under “no thank you.”)
I didn’t notice how much the word “diabetic” bothered PWD until I got to know the broader diabetes community and saw how much that word hurt people. “It means they get to center my whole identity around diabetes,” a friend of mine said. “It makes me feel less than.”
It was that conversation that made me stop using the term for others. And also guided me away from using the term for myself.
Language matters. It always has. And this week, new recommendations on language for diabetes care and education came out, published in a consensus report from the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE).
The report aims to “help guide the language used by healthcare providers to be positive, respectful, inclusive, person-centered and strengths-based, acknowledging the paradigm shift in diabetes care toward a collaborative approach that includes people with diabetes as the primary member of their care team,” according to the press release sent out on October 17th.
“People with diabetes face both the challenges of managing their diabetes and the added challenge of unfair stigma and judgement from others in society. The language used to describe people with diabetes, to describe management and treatment options and even to discuss how to reduce risk or delay the onset of diabetes can impact how individuals perceive themselves — possibly extending to health outcomes,” said the Association’s Chief Scientific, Medical and Mission Officer William T. Cefalu. “Just as we’ve shifted diabetes treatment to acknowledge the critical role of the person with diabetes in their daily care and advocacy, we must adjust the way we talk about diabetes to empower and reduce the negative stereotypes and judgement about diabetes.”
“As healthcare professionals, researchers, journalists and organizations that serve people with diabetes, it is imperative that we listen to those affected by the disease, understand the challenges they face and support a positive, inclusive environment“ said AADE President Nancy D’Hondt, RPh, CDE, FAADE. “Modifying how we talk about diabetes is a relatively easy change that can have a profound impact on self-management and outcomes. In this language movement, we hope to steer the conversation around diabetes to something that is both motivating and free of blame.“
The panel of experts made the following recommendations when discussing diabetes:
- Use language that is neutral, nonjudgmental, and based on facts, actions, or physiology/biology;
- Use language that is free from stigma;
- Use language that is strengths-based, respectful, inclusive and imparts hope;
- Use language that fosters collaboration between patients and providers; and
- Use language that is person-centered.
As a community, we have our own sort of language that helps foster support and improve outcomes, and similarly, the language used by clinicians should work towards a supportive outcome. Hopefully, by implementing language that is careful and free from stigma, our community will feel supported and our health will benefit as a result.