A New Narrative for Diabetes

Language has a strong impact on perceptions and behavior. People with diabetes are aware of and bothered by the language used in diabetes care.

Helpful Highlights

  • Changing language changes outcomes, and words matter when speaking directly to people with diabetes.

  • The goal is to use language that is neutral, nonjudgmental, and based on facts, actions, or biology, is free from stigma, and fosters collaboration and cooperation.

  • Verbalizing can over can't, is simple, energizing, imparts hope, and enhances joy.

  • Let's move away from the word "control" and replace it with "manage".

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Flip the script

A shift is underway to use strengths-based, person-first language over the more demeaning problem-based, disease-first language of the past.

First, your loved one is not a diabetic. They are a person with diabetes. The change in language is important because the latter puts your loved one first – not their condition – and shows compassion and encouragement. This change alone enhances engagement and collaboration with you, and with their providers, and improves their outcomes and experience.

Next, even though it is long into the 21st century, exclusive forms of "can't" phrasing are still used over inclusive forms of "can" phrasing around diabetes. Rather than telling a person with diabetes what they can't do or have, try rephrasing it into something they can do or have. In other words, don't bother verbalizing anything but the alternatives open to them.

  • Don't say: "You can't have the mile-high mud pie for dessert."

  • Do say: "They have a chocolate decadence brownie here." (Because you see that it's made sugar-free.)

  • Even extra: "Do you want to split the chocolate decadence brownie with me?"

This approach is not specific to the words can and can't, but rather a general refrain from articulating the negative and instead highlighting the positive. Sometimes this is done without words altogether, such as simply ensuring that restaurants, destinations, events, activities, and so forth are diabetes-friendly. Or making good choices when you're planning an outing or grocery shopping and meal prepping for your loved one.

We also need to chuck judgmental words and sentiments that perpetuate negative stereotypes. Words like "cheating" when a person with diabetes has an extra serving or a sugary treat, or words like "brittle" for a person with diabetes who has increased difficulty maintaining healthy blood glucose levels or experiences many diabetes-related health events. And an industry favorite… "non-compliant" for persons with diabetes who deviate - even in the slightest - from one or more of their diet, exercise, or medication regimens, or the expectations set for them by their providers. "Non-adherent" is sometimes used as a substitute for "non-compliant" but it is really no better.

Remember that perfect blood sugar management isn’t necessary or even possible. Sometimes seeing the little picture and taking small steps is better than seeing the big one because even small steps are still in the right direction. 

We manage diabetes, we don’t control it

  • Control: to direct the behavior of something to do what you want; to have power over.

  • Manage: to handle or direct with a degree of skill; to take care of and make decisions about.

Regarding diabetes, one is possible, the other is not.

In an excellent article by Wardian (2017), she points out, "It is unreasonable to expect control over something if we do not know all of the factors influencing a given phenomenon. Thus, the notion of controlling diabetes places an impossible burden on both patients and their HCPs [health care providers]."

All the factors that influence diabetes cannot possibly be known, especially continuously throughout the day, because so many things come together in untimed, unquantifiable amounts - intake, output, activity or exercise, medications (including insulin sensitivity), illness, injury, stress, anxiety or depression, lack of sleep, gut function, the weather, hormones - the list goes on.

Your loved one can do everything "right" and still have unpredictable, unexpected highs and lows in their blood sugar.

The bottom line, diabetes will not do what you want.

As a caregiver, it’s important to reiterate messages of management over control with your loved one – and yourself! Control is an illusion. The victory of regularly maintaining glucose within a healthy range means that diabetes cooperated, but it was not controlled.

Parting gift

While diabetes language is a matter to be taken seriously, for some light-hearted humor (though with genuine pearls of wisdom), do an online search for "worst things to say to someone with diabetes" and enjoy!

RESOURCES

American Diabetes Association

Association of Diabetes Care & Education Specialists (ADCES)

Dickinson, J.K., Maryniuk, M.D. (2017). Building therapeutic relationships: Choosing words that put people first. American Diabetes Association: Clinical Diabetes, 35(1), 51-54. doi: 10.2337/cd16-0014

Dickinson, J.K., Guzman, S.J., Maryniuk, M.D., O'Brian, C.A., Kadohiro, J.K., Jackson, R.A., et al. (2017). The use of language in diabetes care and education. American Diabetes Association: Diabetes Care, 40(12), 1790-1799. DOI

Dickinson, L.K. (2018). The experience of diabetes-related language in diabetes care. American Diabetes Association: Diabetes Spectrum, 31(1), 58-64. doi: 10.2337/ds16-0082

Polonsky, W.H., Fisher, L., Earles, J., Dudl, R.J., Lees, J., Mullan, J., & Jackson, R.A. (2005). Assessing psychosocial distress in diabetes: Development of the diabetes distress scale. Diabetes Care, 28(3), 626-631. DOI: 10.2337/diacare.28.3.626

Wardian, J.L. (2017). Diabetes cannot be controlled, but it can be managed. American Diabetes Association: Clinical Diabetes, 35(5), 329-330. doi: 10.2337/cd16-0061

No content in this app, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.

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