“You’re going to eat that?”
“Do you have to test your sugar here?”
“Why is your blood sugar so high (or low)?”
Most people who have had diabetes for a while have heard these or other variations of these questions. Many of the commentators are well-meaning, often friends or family members worried about a loved one’s health.
But in all cases, such comments can foster stigma around the disease. And unsolicited commentary can send some people into a spiral of shame and self-blame that can lead to self-sabotaging behavior, like breaking a meal plan or abandoning exercise.
A 2016 survey of 500 adults with diabetes from Wakefield Research for Accucheck Connect/Roche Diabetes Care reported that 76 percent of adults with diabetes felt that family members or friends had judged them on how they manage their diabetes. And over half, 54 percent, frequently felt judged.
Today most people think that they know a lot about diabetes, so they have a lot of comments and a lot of misguided advice.
— John Zrebiec, Joslin Diabetes Center
In 2013, research published in BMJ Open found that among 25 adults with Type 2 diabetes, 21 felt their condition was stigmatized, or reported evidence of stigmatization. While, in general, participants reported that they had supportive families, friends and workplaces, most described at least one example of “unhelpful, annoying or discouraging behavior from their families or peers.” This behavior was described as being “hurtful, judgmental and interfering, particularly regarding dietary choices and weight management.”
Changing Up the Message for People With Diabetes
None of this is news to Kim Olson, nurse practitioner at the Penn Rodebaugh Diabetes Center in Philadelphia. She frequently hears unhelpful and even false messages from spouses and relatives directed toward a person with diabetes, such as, “It’s your fault you have this disease.”
“This isn’t completely true,” says Olson, “Lifestyle factors play a part but other things do as well, including age, race, genetics and family history.”
Another familiar comment is when people say that they just “read about a cure for diabetes.”
“It’s like being told you’re going to get a gift, but the gift isn’t a reality,” says Olson. “It can be very challenging for people who were born with type 1 diabetes and have spent their lives searching for a cure, or for those with type 2, who have been hoping that this would go away.”
Another oft-heard comment: “You can’t have diabetes because you’re too thin.”
“Not everyone with diabetes is overweight and not everyone who is overweight has diabetes,” says Olson.
Responding to ‘Advice’
How to counter these comments? Olson recommends education.
“It’s more about educating someone on how to be a supportive person. When people are giving unsolicited advice, it doesn’t always come from a malicious place. It’s often because of an underlying fear that maybe that spouse or family member might get sicker,” she says.
One strategy is to teach people to avoid constraining phrases.
“People should avoid phrases that restrict,” says Olson. It’s better to say, ‘How can I help you?’ than, ‘Why did you eat those cookies?’ she says.
It’s also important to recognize that these comments may arise from frustration.
“They want the person with diabetes to do well, just like you want someone to do well at school,” says Olson. “They’re told by the doctor that it can be managed, but sometimes there are factors that the person with diabetes can’t control.”
Learning to Speak Up
Thirty years ago, people knew little about diabetes and didn’t understand it, says John Zrebiec, chief of behavioral health services at the Joslin Diabetes Center in Boston. “But today most people think that they know a lot about diabetes, so they have a lot of comments and a lot of misguided advice.
“For people with diabetes, it’s incumbent on them to explain to other people what they need. In general, that means the people who care about you, family and friends. You need to explain to them what you need and even how to say it,” says Zrebiec.
For example, if you have a low blood sugar, Zrebiec points out that your thinking can go off track. Even the nicest person can become irritable.
“Figure out what you need during those times,” says Zrebiec. “For your spouse to get out of the way? Or should they say something? If so, what? And when?”
Communication Between Couples
Zrebiec admits that changing communication patterns can prove a challenge for people who have been married a long time.
“If you’ve been married for 20 years a spouse might take for granted that their partner knows everything they need,” he says. But over time things can change. “What once seemed understanding might now be annoying.”
Even a simple trip to a supermarket can become a land mine when a partner has diabetes, says Zrebiec.
“Do you want your spouse talking to you and nagging you about everything you put in the basket? Or not? What do you want them to say? What do you want them to do?” he asks.
Don’t Play the Blame Game
Above all, Zrebiec recommends avoiding blame or shame.
“Instead, go to problem-solving,” says Zrebiec. “How can we solve this problem, not whose fault is it. A conversation concentrating on fault is going right into the toilet.”
He also offers advice on receiving unsolicited comments from people who aren’t in your immediate circle.
“You don’t have to educate everybody in the world about diabetes,” Zrebiec points out. “You’re in Target and someone says something ridiculous; you’re not going to educate them or get in a fight with them. Try to take it with a grain of salt and a sense of humor without being bothered by it for the rest of the day. Otherwise you’ll go around annoyed all the time by people who know nothing about diabetes.”
Along with creating stigma, unwanted or judgmental comments can up stress levels, which can translate into higher sugar readings.
“The message should be, ‘We’re in this together. I know that you’re the one trying to mange diabetes. How can I support you?’” Zrebiec says.
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