Avoiding Diabetes Stigma and Guilt

Written by Kathleen Doheny

With commentary by Rachel Head, CDE, diabetes program manager at Phoenix Children's Hospital.

The words your health care team uses when they talk to you about your diabetes or prediabetes treatment plan can make a big difference in how well you do, experts say.

"Messages matter," says Susan Guzman, PhD, co-founder and director of Educational Services for the Behavioral Diabetes Institute in San Diego, an educational nonprofit organization. She spoke about diabetes stigma and guilt at the 2016 annual meeting of the American Association of Diabetes Educators in San Diego.1

When diabetes educators, doctors and others use words like non-compliant, or call a patient who doesn't reach A1C goals a failure, it can be devastating for the patient and for diabetes control, Dr. Guzman says. Once that negative tone is set, she says, people are less likely to follow instructions. They can become unmotivated and even depressed. 

How Words Hurt

To illustrate her point, Guzman gave a case history of ''Deb," a 45-year-old kindergarten teacher who was diagnosed with type 1 diabetes at age 20. Her A1C results were high, most often 8 to 9.5%. She'd had a heart attack at age 35 and her body mass index (BMI) was 31, classified as obese. She was on an insulin pump.

Her endocrinologist actually told her that her A1C needed to be 6.5% and that anything higher was a failure. He bluntly asked her: "Don't you care that you are overweight?"

As a result, the teacher hid her condition at work, Guzman says. She also reported struggling with depression and shame.

Dr. Guzman says some of the skewed messages come from health care professionals focusing on ''trying to fix the patients."  Instead, she says, diabetes educators and others on the health care team view those with diabetes as collaborators in diabetes management. Instead of calling a patient a failure for a higher A1C, a health care professional and patient might talk together about how to reduce it, creating a plan that works for the patients.

Beyond the Health Care Team: Other Stigmas

Besides the sometimes less-than-ideal messages that health care professionals give, Dr. Guzman says, those with diabetes often face stigma from friends, co-workers and others.
Case in point: Earlier this year, after a Starbucks customer ordered a grande white mocha drink, he found a cruel message on his cup. It reportedly said: "Diabetes Here I Come."

The customer was not amused. His two sisters have type 1 diabetes. He protested, and Starbucks issued an apology, according to press reports.

Besides the ridicule, Dr. Guzman says, there is often blame from others. In some circles, "type 2 diabetes is a cardinal sin." People often blame obesity, she says. While obesity is a risk factor, not everyone who develops type 2 diabetes is overweight.

Diabetes definitely can be accompanied by social stigma, agrees Adam Brown, senior editor of www.diaTribe.org. He also spoke at the AADE session. 2

In a DiaTribe survey of more than 5,400 people with diabetes, he says, 52% of those with diabetes reported that the diagnosis is accompanied by social stigma. Those with type 1 reported experiencing more social stigma than those with type 2.

At first that may sound surprising. However, the researchers say that may be due to type 1 being more ''visible," with type 1 patients needing injections of insulin rather than oral pills. Most often, those who reported feeling stigmatized said that people saw diabetes as a personal failure or character flaw or that others considered them a burden on the health care system, Brown says.

The survey gathered some heartbreaking notes from respondents. One woman wrote that she had had boyfriends break up with her due to diabetes and that "People act like I have the plague and more."

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Second Opinion

The observations by Guzman and Brown don't surprise Rachel Head, CDE, RD, the diabetes program manager at Phoenix Children's Hospital, who attended the meeting session. Stigma, she says, is a frequent topic of conversation in weekly Twitter chats and on community discussion threads online.
Parents of children with diabetes often report feeling stigmatized, she says. "I'm sure teens [often] really feel ostracized," she says.

Action Plan

As awareness of the importance of words increases, conversations are likely to become less stigmatized, experts say. Meanwhile, those with diabetes can also take steps to help reduce the stigma, say Head and Dr. Guzman. Here's how:
• Have conversations with those close to you, Head says, to talk about diabetes—how it occurs, what it takes to manage it. "I have had parents of kids here in our practice who make a Power Point or give a handout or show a video [to the kids' parents, classmates, others] just to normalize it a bit."
• Don't be shy about telling your healthcare professional how you'd like to be talked to. Head says she tells her patients to ''call us out'' if they use language that makes them feel unmotivated or like a failure.
• Challenge misinformation and finger-pointing, Dr. Guzman says, the way the Starbucks customer did.

 

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