30 August 2016Why Does Language Matter in Diabetes?


I have been intrigued by words for as long as I can remember. I blame my parents, who were both educators, for instilling in me a love for the English language. I’m curious about where words came from, what they mean, how they are pronounced, etc. In the late 80s and early 90s I first learned about the impact of words on people with diabetes. I was a counselor and then student nurse (and then camp nurse) at diabetes camp, at the time. We talked about words like “diabetic” and “test” and “good/bad” and the damage that they can do (both conscious and subconscious). My interest in language grew and now it’s my passion.

In 1993 I gave my first talk on language (for nurses on a school-age pediatric hospital unit). We discussed the importance of not calling patients by their diagnosis. Since then I have written and spoken about language several times, and last year I began studying the impact of diabetes-related language with formal research. It turns out that many people are not only aware of words used around diabetes that really bother them and have a negative impact, but would like to see change.

Recently there seems to be an explosion of language-related blog posts and discussions. The word is out (pun intended)! People are discussing the negative impact that language can have on people with diabetes. It can lead to stress and distress; it can even lead children and adults to put less effort into their diabetes care. At the recent American Association of Diabetes Educators’ Annual Meeting there were many discussions about language and diabetes. People are taking steps to spread the word and inform others about the importance of using person first, empowering, and strengths-based language.

What this means is instead of calling people by their diagnosis – or using labels like “diabetic” – we can say “person with diabetes”. Instead of using judgmental terms such as “good blood glucose” or “bad control”, we can say “blood glucose levels that are in or out of range”. Instead of words that invoke shame and guilt, such as “compliant”, “non-compliant”, or “adherence”, we can use “making choices”, or “taking medications”.

It turns out that words make a difference for people. Words form concepts and concepts form meaning. When negative, judgmental words are used regarding diabetes (or anything else, for that matter), people shape meaning out of those words and start to feel that they are bad because their blood glucose is “bad” or because they’ve been called “non-compliant”. In reality, people who are judged as “non-compliant” often cannot afford to buy medications, or haven’t been taught how to check blood glucose levels. So whether it’s a choice, or a lack of resources, it’s not “non-compliance”.

What can the person with diabetes do to help healthcare professionals and society in general stop using negative, harmful language? The first step is to advocate for ourselves by using empowering language when describing our own experiences with diabetes. I say that I have diabetes. It’s just one part of me – and not the most important part! I check my blood glucose and I manage my diabetes. All of these words put me first, put me in charge, and build on my strengths. This sends a powerful message to others and may even help them shape their own language.

This isn’t about being politically correct. It’s not a response to being offended by words. It’s a movement toward helping people with diabetes feel empowered to take care of themselves. Mostly I am vocal about diabetes-related language to give a voice to those who aren’t comfortable speaking up, or worse yet, those who don’t even realize (yet) that it makes a difference.

Jane K. Dickinson

RN, PhD, CDE

is a nurse and diabetes educator who has had type 1 diabetes for 41 years. She lives in Colorado with her husband and two teenage kids. Jane is the program director and faculty for the Master of Science in Diabetes Education and Management Program at Teachers College Columbia University and the Certificate in Advanced Diabetes Topics (which are solely online). Jane also serves as the type 1 diabetes resource in her local community and blogs at www.janekdickinson.com. Jane has been passionate about starting a diabetes language movement for over two decades, and she began her research on the impact of diabetes-related language in 2015.

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