These are some of the worst words to use about people with diabetes:
We aren’t diabetics who try to control our disease. Instead, we are people with diabetes who manage this condition.
Team Novo Nordisk in June asked people with diabetes, parents, and partners to share their opinions on the language of diabetes. Almost 400 people responded to the survey that the team published on August 15.
The clearest preference is the responses to the question whether diabetes should be well managed or well controlled. An overwhelming 72 percent wrote “managed,” and only 15 percent wrote “controlled.” For 12 percent it doesn’t matter.
Diabetes is a condition
Diabetes is a condition for 51 percent and a disease for 31 percent. Someone who has diabetes is a person with diabetes for 36 percent and a diabetic for 30 percent.
The other choices for the respondents show that 64 percent prefer to check their blood glucose and only 17 percent test it. And those who don’t have diabetes are people without diabetes for 55 percent, rather than healthy or normal people for only 15 percent of them.
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 write more articles about. Further, the Novo Nordisk survey tabulated numbers while my 10 questions received 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 even at family get togethers while others go about their business and have no issues with blood glucose. 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.”
And what about 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 some of the most 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 and those of us who have this condition 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, and yet gently, explain the implication of these words whenever we hear them applied to ourselves or to other people who have diabetes.
This article is based on an earlier version of my article published by HealthCentral.
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