Troubling Words: How Not to Talk About Diabetes

Patient Expert

Here are some of the worst words to use about people with diabetes:

We are not diabetics who try to control our disease. Instead, we are people with diabetes who manage this condition.

In June, 2016 Team Novo Nordisk asked people with diabetes, as well as their parents and partners, to share their opinions on the language of diabetes. Almost 400 people responded to the survey.

The clearest preference involved responses to the question of whether diabetes should be "well managed" or "well controlled." An overwhelming 72 percent selected “managed,” and only 15 percent chose “controlled.” For 12 percent, the phrasing didn’t matter.

Diabetes is a condition

Diabetes is a condition for 51 percent of the survey respondents and a disease for 31 percent. Someone who has diabetes is a person with diabetes for 36 percent and a diabetic for 30 percent.

Sixty-four percent of respondents preferred to check their blood glucose and only 17 percent test it. And those who don’t have diabetes are people without diabetes (55 percent), rather than healthy or normal people (15 percent).

The world’s first professional team comprised completely of cyclists living with Type 1 diabetes spearheads Team Novo Nordisk, which also includes nearly 100 triathletes and runners from 17 countries with Type 1 diabetes. Its mission is to inspire, educate, and empower people affected by diabetes.

Comments on my questions

Separately, in July, I asked my 1,200-plus Facebook friends to comment on somewhat different terms. This complements, rather than conflicts, with the Team Novo Nordisk survey.

The Team Novo Nordisk survey reached a higher proportion of people living with Type 1 diabetes. However, my questions reached more people who have Type 2 diabetes, because that is the condition I have, and I write about it frequently. Further, the Novo Nordisk survey tabulated only percentages, while my 10 questions elicited many thoughtful comments.

The question that got the most comments was “Does the phrase, ‘Type 2 diabetes is a lifestyle disease,’ offend you?”

Code for self-inflicted

Some of the 18 responses to this question show how much those words offend some people: “It's code for self-inflicted,” Lori replied. “And it's not.”

“I wouldn't say it offends me, but it annoys the snot out of me,” Holly replied. “It makes it sound like diabetes is something people choose. There are lots of people who make the same ‘lifestyle choices’ I have, but who do not have diabetes.”

“It offends me to the core” Cynthia replied. “I eat mostly healthy. I do without sweets most of the time…. I didn't choose to get diabetes. It is an illness that runs in my family. I would never choose to have to take a bunch of meds and shots every day."

Not all of the people who commented were offended. For example, Bob replied: “I seriously don’t care one iota. Being offended is a waste of time, energy, and life minutes. I focus on all the positives and find that serves me well.”

Are you noncompliant?

Another of my questions was, “Are you ever noncompliant with what you doctor says you should do?”

“The only word that bothers me is noncompliant,” Kelly replied. “I have gastroparesis, and before I figured out how to manage things, my blood glucose was all over the place. I had a doctor yelling at me once, and I said, ‘Tell me what to do and I will do it.’ He just stood there and stared at me.”

Regarding the question, “Are you a diabetic?” Samantha replied, “That does bother me. My daughter is not 'diabetic.' That is not all she is. She is a person. A daughter. A sister. A friend. A very much loved human being. It does not define her!”

Do you suffer from diabetes?

Finally, the fourth of my 10 questions that received especially thoughtful responses was, “Do you suffer from diabetes?”

Doris replied, “Suffer is my biggest pet peeve. I don't suffer from anything.”

The words that people use to describe diabetes matter greatly. They affect how people think, talk, and act about those of us who have diabetes.

Each one of us who has diabetes can help reverse the bias, prejudice, discrimination, and lost opportunities that these words engender. We can help the entire diabetes community when we forcefully, yet gently, explain the implication of these words whenever we hear them applied to ourselves or to other people who have diabetes.

See More Helpful Articles:

The Stigma of Type 2 Diabetes

The 10 Worst Myths about Diabetes

Incorrect Diabetes Terms

David Mendosa is a journalist who learned in 1994 that he has Type 2 diabetes, which he now writes about exclusively. He has written thousands of diabetes articles, two books about it, created one of the first diabetes websites, and publishes the monthly newsletter, “Diabetes Update.” His very low-carbohydrate diet, current A1C level of 5.1, and BMI of 19.8 keeps his diabetes in remission without any drugs.