— Mary Hyde, 64, recalls her mother’s response after hearing Hyde had been diagnosed with Type 2 diabetes.
“I told you not to eat all those sweet rolls when you were a teenager.”
For years after her mother’s reproach, Hyde kept her condition and treatment pretty much to herself. “I didn’t speak about it. I never tested my blood sugar in public,” says Hyde, who lives in San Diego.
Hyde's efforts to hide her diabetes aren't unusual. Few chronic diseases carry more stigma than Type 2 diabetes. While patients with heart disease or cancer are often showered with sympathy, people with Type 2 diabetes are criticized for being fat, lazy or junk food junkies.
Even diabetics themselves can have a blame-the-victim feeling, says Theresa Garnero, a diabetes nurse educator at the California Pacific Medical Center in San Francisco. “Granted, if you’re not eating healthfully, and you’re not exercising like you should — and most people don’t — there could be a modicum of truth to that.”
Clinical psychologist Susan Guzman, director of clinical services at the Behavioral Diabetes Institute in San Diego, hears the recrimination over and over again: “You give it to yourself by being overweight or eating badly or not taking care of yourself.”
While excess weight is a major risk factor for Type 2 diabetes — more than 85 percent of people who have it are overweight, according to government estimates — not everyone who is overweight is diabetic. There are uncontrollable risk factors, including family history or age. And some ethnic groups such as African-Americans and Hispanics are more likely to develop it.
The problem is, shame plus denial, especially with loved ones or medical professionals, can be a risky combination when it comes to managing diabetes, experts warn. People who hide their condition may not be as careful about monitoring their blood sugar or eating healthfully.
Even Guzman’s own father went into "diabetes denial" when Guzman diagnosed him a couple of years ago at a family get-together. She’d brought along a meter to check his blood sugar. “He avoided talking to his doctor about it for a good six months.”
Her dad finally faced facts, Guzman says, and his diabetes is now well-controlled.
Type 2 diabetes, the most common form of the disease in the U.S., is linked to a range of serious problems, including kidney disease, heart attack and cancer. It doesn’t help, Guzman says, that the American Diabetes Association and other well-intentioned organizations have described diabetes as the leading cause of blindness and amputations.
“That’s false,” Guzman says, “because it’s poorly managed diabetes that’s the cause of those things. Well-managed diabetes is the cause of nothing.”
Ann Bloise, 50, is convinced her diabetes is all her fault. No one else in her family has the disease. She is obese and hates to exercise.
After being diagnosed five years ago, she didn’t tell anyone, not even her immediate family, for the first few weeks. “I think I told my mom first. I burst out crying. I felt ashamed,” she says.
Bloise, who lives in Dallas, still shares her diagnosis only with few close friends – whom she’s told only so someone could help in case her blood sugar spiked or fell too much. “I don’t take medicine in front of people. Even when other people tell me they have it, I don’t talk about it,” she says. She admits, “it’s not as under control as it should be.”
One of Garnero's clients has yet to tell her sister that she has diabetes, which worsens the situtaion. “When she goes to visit, and her sister gives her ginormous boxes of chocolate because it’s Halloween time or whatever, she won’t correct her,” says Garnero.
Hyde, who was diagnosed at 46, finally started to open up about her condition about five years ago, after both her parents had died. Although she had never been terribly overweight, and she took her medication and exercised a little, she was still “very confused about nutrition.” She’s since become a certified health coach and started her own diabetes support group. Often newcomers arrive at the group full of self-recrimination.
Hyde reassures them. “You didn’t do anything wrong.”