Dealing With Diabetes Stigma
Why nobody’s a winner when we play the blame game
Sue Rericha was still reeling from her type 2 diabetes diagnosis when she told her friend about it in 2008. Her friend’s response? “Oh, it runs in our family too, but we’re watching our weight so we won’t get it.” Rericha, whose body mass index is in the normal range, was bewildered: Did her friend just call her fat? And if so, did her friend believe her diagnosis was her fault?
Welcome to one of the less-discussed complications of diabetes—the blame game. Even though more than 29 million Americans have diabetes, misconceptions surround the disease, making life harder for those who live with it. If you’ve heard anything about diabetes, you’ve also probably heard some stereotypes about the disease and the people who have it: That people with diabetes have brought the disease onto themselves by eating too much sugar or being overweight. That they’re a burden on the health care system. That they can cure themselves by drinking okra water or eating cinnamon. The media certainly doesn’t help: Television news stories about diabetes often don’t differentiate between type 1 or type 2, insinuating that all diabetes could be prevented or delayed with a healthy diet or exercise. They are sometimes illustrated with images of overweight people with their heads cut out of the frame.
People with diabetes are often tasked not just with the burden of managing their diabetes but also educating the people around them about the condition. That can take an emotional toll. So can the sense of shame that comes from others’ misconceptions, or a person’s own feelings of guilt.
No One Chooses Diabetes
Rericha, 45, of Macomb, Illinois, says she’s tired of hearing people suggest that people with diabetes could reverse the disease “if they would just get off the couch.” An elementary school teacher, Rericha manages her diabetes with diet and exercise. But no matter how hard she works out, she knows she’ll always have diabetes, and it isn’t only because of her weight, though excess weight can be a risk factor for type 2 diabetes. Type 2 runs in her family—a major risk factor for developing the disease. And Rericha had gestational diabetes, or diabetes during pregnancy, five times. Having it even once is a major risk factor for developing type 2 diabetes later in life, according to the American Diabetes Association.
Amy Walters, PhD, a licensed psychologist and director of behavioral health for St. Luke’s Humphreys Diabetes Center in Boise, Idaho, says at least half of her patients with diabetes tell her that they feel shamed about having the condition. Those feelings can be triggered by external and internal sources. And such feelings can do great harm, mentally and physically. “There’s definitely a connection between thoughts and feelings … [and people’s] ability to take care of their disease,” she says.
You Against the World
Negative perceptions can be perpetuated in the public by the media or individuals. They can come from biased news reporting, inaccurate information, and hurtful jokes—“I ate so much dessert that I have diabetes now.”
Even truths about type 2 diabetes—including the fact that excess weight, unhealthy food choices, and inactivity are contributing risk factors—can be overblown, shifting blame onto people with the disease. Many of the risk factors are things that people are unable to change, including age, race, and family genetics. Walters suggests that diabetes advocates fight these unfair stereotypes about type 2 by “pointing out those factors and helping educate the public [that] this is a highly heritable disease,” she says. “Healthy lifestyle is certainly one component, but it’s not the only component. And lifestyle changes are not always enough to manage the disease.”
Another source of stigma: the Internet. Kate Cornell, 60, of Williams, Arizona, knows that force all too well. Cornell blogs about her type 2 diabetes, and while she’s never faced stigma in person, she’s seen a lot of hate online. “That has been one of the things that I’ve tried to kind of fight against and educate people [about]—not only those who have type 2 diabetes, but the general public—[that] this is not something that we did to ourselves,” Cornell says. “There’s always someone who makes a comment, ‘It’s just because you’re fat and lazy. You just need to stop eating so much.’ It’s very frustrating, and usually I just have to step back. You aren’t going to change somebody’s mind online.”
Health blogger Mike Durbin, 31, of Fort Wayne, Indiana, was diagnosed with type 2 diabetes and congestive heart failure in 2008. Online, he says, comments can be vitriolic, including those on a 2011 USA Today profile of him. “Some of the comments were: ‘If this guy would just get off his [couch] and do something, try exercising, try eating better, [he wouldn’t have diabetes]’—most of the typical comments that you hear toward people with type 2,” he says. “I’ve gotten to where I really don’t take much of that to heart. It would really just eat you alive if you did.”
But even the strongest person can be worn down by repeated rude statements. Whenever you have a negative stigma association with a disease it can be very hard to take care of yourself. "It’s painful to think about,” Walters says. “And that can get in the way of treatment: testing blood sugar, following a diet plan, [even] following a diabetes [medication] regimen.”
Your Own Worst Enemy
Cornell has also experienced self-blame, even though she knows, logically, that her diabetes is not her fault. “On my bad days, when my mood is not great or my numbers are not where I want them to be, it’s so easy to say, ‘Dang it! Why didn’t I do better?’ ” she says.
That’s why mental health is an important component of diabetes care, says Floyd Russak, MD, medical director of East-West Health Centers in Greenwood Village, Colorado. He describes the challenging emotions that often come with diabetes: “Self-blame is more a guilt thing, and outside blame is sort of shaming,” he says. “Both of them are negative emotions, don’t work well, and shouldn’t be part of our treatment regimen.”
Clash Among Comrades
Another source of stigma for people with diabetes comes from potential allies: Infighting can occur among people with type 1 and type 2 diabetes. Some people with type 2 feel as though people with type 1 diabetes do not want to be associated with them, says Cornell, because they didn’t “cause” their diabetes. Cornell tries to dispel those myths gently. “A lot of that seems to come from parents of children with type 1. It’s the momma bear effect,” she says. “They’re protecting their children. One of the things I try to say nicely [when people with type 1 say they don’t deserve diabetes is] ‘neither do I.’ ”
Danielle Panetta has been on both sides of this divide. Panetta, 40, of Boston, was diagnosed with type 2 diabetes as a college student. Eight years later, a C-peptide test, a measure of the amount of insulin the body produces, led to a new diagnosis: She had type 1 diabetes.
Panetta could have gone the route of some people with type 1, pointing out that her diabetes was not her fault. But instead, she’s become an advocate for people with all types of diabetes. “I just feel like [I have] spent so much time being told that I ate myself into this disease. It’s not true, and it’s also still not true for the people [who do have type 2],” she says.
Empathy from health care providers can break down stigma. In an experiment by Boehringer Ingelheim and Eli Lilly and Co. conducted at the 2015 American Diabetes Association Scientific Sessions in Boston, researchers looked at the lifestyle choices attendees—mostly researchers, clinicians, and diabetes industry professionals—made when presented with healthy and less-healthy options. When offered veggies or a brownie, attendees chose veggies only half of the time—or even less often if the caloric value of each snack was not posted. When offered the option to take the stairs or ride an escalator, 84 percent of attendees were likely to choose the escalator. So health care providers often slip up on the same healthy choices people with diabetes are asked to make every day. The Experiment in Understanding researchers suggested that empathy from health care providers could lead to more positive interactions between health care providers and patients, leading to more positive health outcomes.
To move beyond blame, people with diabetes of all kinds can work together to make life less stressful for themselves. Walters says education is the first step: Teaching yourself about diabetes using reputable sources, including your diabetes care team, will arm you with the knowledge you need to achieve great diabetes care. This knowledge will also help you educate people—from well-meaning family members to rude strangers—who might approach you with myths or stigma.
Beyond that, Walters urges people with diabetes to set reasonable goals for both their physical and mental health. Setting goals that are too tough to achieve can make people feel like they’ve failed, and that can increase self-blame. Maintaining a positive attitude—and asking family members and friends to help you to do that—is the best way to fight that feeling. “Blaming just isn’t helpful,” Walters says.
You’re My Type
Type 1 and type 2 diabetes have different risk factors and contributing biological processes, but people with any type of diabetes have more in common than they might think. Sue Rericha, who lives with type 2 diabetes, makes an interesting comparison: “I see it in the same category as different types of cancer. They’re not all the same, but they’re all still cancer.” How diabetes comes about and how it is treated may differ for each person, but the desire for a world without diabetes is universal.
Get your facts straight! 5 myths and realities about diabetes.
Interested in more information about healthy living with diabetes? Click here to subscribe to Diabetes Forecast magazine.