After 58 years of living with type 1 diabetes, Marilyn Krupnick thought she'd heard it all. Children who warned others to stay away from the "dirty diabetic" or they'd "catch it, too." Well-meaning friends and relatives with misguided advice the Abington resident and former schoolteacher long ago learned to quietly ignore.
But recently, as Krupnick took her blood glucose reading, a doctor friend said, "I wish you wouldn't do that at the table," as if there were something unsanitary about the process.
Then there was the family member who overheard her say that she had a high blood sugar reading.
"He immediately jumped in with 'What did you do? You must have eaten something bad,' " she said.
"But that's not always it. Sometimes it's not what you eat that drives your sugar up, but you have a urinary tract infection, or depression, or you fought with your husband or one or your kids, or you have someone sick in the family."
Her experience illustrates a serious problem for people with diabetes: Not only must they cope with the physical effects of a chronic disease, they also must contend with the stigma of having a condition even many doctors don't really understand.
A 2014 poll for the diaTribe Foundation, a nonprofit diabetes organization, suggested that most people with diabetes feel stigmatized by the condition, regardless of its origins.
Mark Schutta, medical director of the Penn Rodebaugh Diabetes Center, attributes some of the shame to poor health literacy among Americans in general.
"People misunderstand what type 1 or type 2 are," he said. "It's unclear if they understand that type 1 is nobody's fault, that it's an autoimmune attack on beta cells due to a genetic problem. It is true that most type 2's have family history and have made some poor lifestyle decisions over a long period of time that disturbs their metabolism and ability to process food as fuel. But there are some people with type 2 whose lifestyle is not the basis of the disease."
And the burden of shame only makes it harder to handle the hard work required to deal properly with diabetes.
"Many people not only feel stigmatized by the disease, but see their diabetes as a character flaw, as though there is something wrong with them as a person, that they are lazy or unmotivated, which can affect their personal relationships and disease management," said Susan Guzman, a clinical psychologist and co-founder of the Behavioral Diabetes Institute.
"And the fear of being stigmatized leads some people with diabetes not to tell others about their disease, which can lead to more shame," she said.
"Shame affects people with diabetes, particularly those with type 2 diabetes," said Neva White, senior health educator at the Jefferson Center for Urban Health. "We try to make people understand that they may have contributed to their diagnosis, but it is not all their doing."
For people who harbor such shame, comments - even if they are meant to be helpful - may aggravate the problems.
How to fight this sense of shame?
In her support groups, White tries to help participants reframe how they think about their health.
"We talk about how we need to rethink having diabetes: How can I use this new information as a catalyst not only to change my lifestyle, but maybe to change other things? How can I change how I look at my day? Or my future? Or what I want to do with my life?"
Another strategy is to reconsider the many numbers involved in evaluating diabetes - daily blood glucose readings, weight, BMI, and A1C's, which are three-month averages of blood sugars. Patients can judge themselves as a "success" or "failure," based on each number.
"I tell people that your numbers are your power, and that they help you make the next move," said White. "When you don't take your blood sugars, it's like driving a car and not knowing how fast you're going. You can use the number to see what it is after you go to the gym, not only when you ate chocolate cake."
How doctors present information to patients can also be pivotal.
"While there is no doubt that if people modify their diets and are more active they will be in better control, there is no place for a health provider to be condescending," said Schutta. "Our job is to be understanding and caring and help a person live a more healthy life. There are so many variables: stress, financial problems, poor access to health care, inability to pay for medications, someone who is forgetful or not organized, depression, and mental illness. We have to recognize that for some people no matter how hard they try to learn about the disease, there are barriers to good care. And we have to treat each case individually."
"Getting educated about diabetes really helps," Guzman said. "You can push back on some of the stigmatizing things with facts. Sure, your lifestyle and weight played a part, but now you are doing something positive about it."
She said that resisting tempting foods is a problem for so many people that it alone ought to elicit sympathy.
"People with diabetes need to be supported and encouraged," she said. "But we rarely talk about diabetes in that way."
To help fight stigma and educate doctors in what diabetics need, Krupnick has been talking to young medical students at Jefferson over the last nine years, sharing her experiences with having type 1 diabetes.
"I tell them it's like playing chess without the possibility of checkmate," she said. "There is no end to the game. You play the game as best you can. And it's 24/7."
"And unless you have diabetes, you probably don't understand that pain."