What is diabetes distress?
The never-ending worry about complications; the carbohydrate counting; the guilt you feel when you skip exercise; the anger you feel because you can’t eat like others. It’s exhausting and stressful, and experts have a name for it: diabetes distress.
The term, coined in the late 1990s, is gaining attention. Both the American Diabetes Association (ADA) and American Association of Diabetes Educators (AADE) featured presentations on distress at their 2014 annual meetings, and it was addressed in two major international studies. Distress is a normal reaction to the stresses and strains of managing a progressive, chronic disease like diabetes. It’s the constant sense of burden or defeat you can’t seem to shake.
Distress is not depression, which is a clearly defined psychiatric disorder. For a diagnosis of clinical depression, a person must have at least five of nine symptoms for at least two weeks and have difficulty functioning as usual. People often use the term “depressed” as a synonym for feeling blue or stressed, but depression is more than that.
“You couldn’t live with diabetes and not experience what I used to call depression. It never occurred to me to use the word “distress,’ ” says Kate Cornell, who has lived with type 2 diabetes for a decade. Kate’s distress can be triggered by several things, such as feeling deprived by being unable to eat certain foods or getting a high blood sugar reading after a healthful meal.
Distress doesn’t discriminate
People with type 1 and type 2 diabetes can have similar levels of distress, but the sources and complexities may be different, says Lawrence Fisher, Ph.D., of the University of California, San Francisco. Fisher and his colleagues developed a specific questionnaire for health care providers to diagnose diabetes distress.
People with type 1 tend to have more a complex regimen to follow, more volatile blood sugar levels to track, and diagnosis at a younger age, adding up to more years of dealing with the condition. Karen Graffeo, of Fairfield County, Connecticut, has lived with type 1 for 35 years. “You’ve got this unrelenting disease to manage the rest of your life. You can’t even celebrate the victory of a few good glucose results, because you know the next crisis looms ahead. It’s hard not to let the stress pile up and get you down.”
For people living with type 2, Fisher says there can be a burdensome stigma associated with the condition. “It’s hard to get emotional support when the outside world’s attitude is you’ve brought this on yourself,” he says. Kate agrees: “People with type 2 diabetes can be painted as fat and lazy, a depiction that lays blame at my feet and plays with my head,” she says.
In contrast, a 2014 survey conducted by dQ&A, a diabetes research company, asked a panel of 5,000 people in the U.S.: Does having diabetes come with social stigma? Type 1s were the most likely to answer yes; type 2s on intensive therapy regimens, such as multiple daily insulin injections, were close behind, says Richard Wood, founder and CEO of dQ&A. “People with self-reported poor control or excess weight were also more likely to report guilt, shame, blame, isolation, and embarrassment,” he says.