Why does language matter when we talk about diabetes? 

Have you ever been on the wrong side of a conversation at a clinic or a hospital, where the language used to describe you sounded critical, judgmental, and even depersonalizing? Me, too. I have been called a diabetic many times. At some point, you start asking yourself, since when did my full identity become a diabetic patient instead of a person living with diabetes. I live with diabetes; diabetes does not define me.

There are many examples of how words carry power. Perhaps you saw the website that referred to diabetic feet. I wondered if my feet were diabetic, too. If you see this online, you are more likely to skip to the next website in your search results. But in a clinical setting, you might seek out another health care team altogether. On the other hand, you could decide to stick with your current team and help them understand that when it comes to diabetes, language matters!

Words are powerful tools that health care providers can use to either empower people living with diabetes or demotivate them.

As a person living with diabetes, my diagnosis does not define me. I have lived with diabetes for over 30 years, so I can honestly say that it can be overwhelming at times. Like many chronic diseases, diabetes affects every aspect of my daily routine. However, I am more than my condition, and the language used should reflect that.

Trying to remove the use of disempowering language, particularly from the health care system lexicon, has been a battle that many people living with diabetes have been fighting for many years. However, this struggle is not confined to the diabetes community. Proof of this can be seen in the Global Down Syndrome Foundation’s campaign Words Can Hurt^1,  a campaign helping to highlight labels that are considered hurtful and dehumanizing.

In 2011, Diabetes Australia, Australia’s national diabetes organization, published a position statement entitled, A New Language for Diabetes. Their aim was to encourage greater awareness of the language surrounding diabetes. In fact, Diabetes Australia “believes that optimal communication increases motivation, health, and the well-being of people with diabetes.”²  In 2017, the American Association of Diabetes Educators (AADE) published Speaking the Language of Diabetes³.  The publication provided many opportunities to increase awareness of the way health care professionals talk to (and about) people living with diabetes and their psychosocial well-being. In their 2017 publication, The Use of Language in Diabetes Care and Education⁴,  Dickinson and colleagues proposed four guiding principles for talking about diabetes:

1. Diabetes is challenging.
2. Stigma related to a diagnosis of diabetes can contribute to stress, shame, and judgement.
3. Every member of the health care team can serve more effectively through a person-centered approach.
4. The use of empowering language can improve communication and enhance motivation.

As a person living with diabetes, a mother of a child living with diabetes, and as a diabetes educator, I believe it is time to educate health professionals on the need to use language that promotes empowerment and respect. I would like to conclude by quoting Dickinson again, “In fact, the time has come to reflect on the language of diabetes and share insights with others. Messages of strength and hope will signify progress toward the goals of eradicating stigma and considering people first.”⁵

The findings and conclusions in this publication are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

1. ^{_{https://www.globaldownsyndrome.org/about-down-syndrome/words-can-hurt/}}
   
2. ^{_{“Furthermore, careless or negative language can be demotivating, is often inaccurate, and can be harmful.” (Position statements. (2018). Retrieved from https://www.diabetesaustralia.com.au/position-statements).}} 
3. ^{_{This document published by the AADE was designed as a guidance document. http://journals.sagepub.com/doi/10.1177/0145721717735535}}
4. ^{_{http://journals.sagepub.com/doi/10.1177/0145721717735535}}
5. ^{_{Dickinson, J., Guzman, S., Maryniuk, M., O’Brian, C., Kadohiro, J., & Jackson, R. et al. (2017). The Use of Language in Diabetes Care and Education. Retrieved from https://www.diabeteseducator.org/practice/educator-tools/diabetes-language-paper}} 

What we would like to hear from you in this discussion:

1. Would ‘following orders’ result in perfect blood glucose levels all the time?
2. Do you think that people with diabetes act irresponsibly or are ‘difficult’? What makes a patient a “difficult one? 
3. What are “good’, ’bad numbers?
4. How do you define being in “compliance”?
5. Are people with diabetes failing’ to adopt certain self-care activities?
6. How do you define “poor control”?
7. Do you have cooperative and uncooperative patients?
8. What is the difference between ‘compliance’ and ‘adherence?
9. Do you agree with this statement: “For people with diabetes, feelings of failure, frustration and self-blame are common consequences of unrealistic expectations”?
10. How do I feel when I am labeled as a “diabetic”?
11. As a person with diabetes, I try to be sensitive and describe someone as "a person with diabetes" rather than a diabetic", but does it matter whether we "control" our diabetes or "manage" it? (I did feel uncomfortable when someone described, "coping with diabetes" what about you?
12. Do we "make choices" to have a pizza or do we "cheat"? Is there any difference?
13. So, to my question in the title - does language matter ... to how we perceive ourselves, respond to the treatment or how willing we are to make any changes (or "choices")?
    
     

Reference reading:

Word suggestions for media to replace language with potential negative connotations: https://www.diabeteseducator.org/docs/default-source/practice/educator-tools/diabetes-language-media-guide.pdf?sfvrsn=0

Preferred words-language guidance for diabetes related research, education and publications: https://www.diabeteseducator.org/docs/default-source/practice/educator-tools/HCP-diabetes-language-guidance.pdf?sfvrsn=8

AADE webpage about What You Say Matters https://www.diabeteseducator.org/practice/educator-tools/diabetes-language-paper?utm_source=Internal&utm_medium=MAST&utm_campaign=LanguageGuide

Dickinson, J., Guzman, S., Maryniuk, M., O’Brian, C., Kadohiro, J., & Jackson, R. et al. (2017). The Use of Language in Diabetes Care and Education. Retrieved from https://www.diabeteseducator.org/practice/educator-tools/diabetes-language-paper

Diabetes Australia Position statement https://static.diabetesaustralia.com.au/s/fileassets/diabetes-australia/f4346fcb-511d-4500-9cd1-8a13068d5260.pdf

Other Resource from Diabetes Australia http://www.dawnstudy.com/content/dam/Dawnstudy/AFFILIATE/www-dawnstudy-com/Home/DAWN2/Documents/ACBRD-Position-statement-A-new-language-for-diabetes-Improving-communications-with-and-about-people-with-diabetes-Australia.pdf

Information about the discussion leader

Betsy Rodríguez, RN, MSN, CDE is a nurse, diabetes educator, national and international speaker on diabetes-related topics, bicultural specialist in health communication strategies, and author, presently serves as a Senior Public Health Advisor in the Translation Health Education and Evaluation Branch in the Division of Diabetes Translation (DDT) at the Centers for Disease Control and Prevention (CDC).  At CDC, Mrs. Rodriguez provides technical assistance and support to state grantees, national diabetes-related professional organizations, such as the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE), as well as community-based organizations. At the international level, Mrs. Rodriguez provides technical assistance and support to the International Diabetes Federation, IDF SACA Region.