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.
It’s better together
More than half of all people with diabetes don’t achieve good health and quality of life despite access to effective medical treatment, and researchers wanted to know why. So in 2001, Novo Nordisk and the International Diabetes Federation launched DAWN (Diabetes Attitudes, Wishes, and Needs), an extensive, two-part global study. In 2012, DAWN2 kicked off with more countries involved and input from family members, says Mark Peyrot, Ph.D., professor and chair of sociology at Loyola University Maryland in Baltimore and DAWN2 principal investigator.
The DAWN studies found that family members and loved ones play a large part in successful diabetes management. Finding positive ways for caregivers to offer support reduces stress for everyone involved. DAWN2 verified that distress is not generally measured or addressed by care providers, yet it’s high among people with diabetes and their family members.
Here are a few findings from the DAWN2 study in the United States:
• Most people want to improve their self-management, particularly eating and exercise habits.
• People and family members with a large social support network seem to experience less distress.
• Too few people ask for support when they need it and don’t let others know how to offer support.
The study asked questions of more than 15,000 people in 17 countries. Respondents were people with type 1 or type 2 diabetes, family members of people with diabetes, and health care providers. Other findings:
• 45% of people with diabetes reported distress; 14% reported likely depression.
• 24% think their provider asks how diabetes affects their lives; 52% of health care providers said they ask.
• 40% of family members reported a high level of distress about their relative; 35% reported a burden from caring for their relative.
Diabetes distress tips
BE AWARE. “Distress rarely gets addressed. It often escalates into an explosive situation before it’s recognized,” says Lawrence Fisher, Ph.D., of the University of California, San Francisco. Learn your pattern of distress to more easily separate your behaviors from your feelings. You may feel demoralized,
but you can put on your walking shoes and go for a stroll, he says.
CAST A WIDE SUPPORT NET. Your support system can include loved ones, health care providers, diabetes educators, and other people with diabetes. Join a local support group or engage in the diabetes online community. After having diabetes for 20 years and not knowing another soul with it, Karen Graffeo went online seeking insights about wearing an insulin pump. “I discovered my fears weren’t weird and I wasn’t a failure—a huge normalizer for me,” she says. Kate Cornell says people with type 1 are more involved online, and the community can be a challenge for type 2s to join. “Try observing, then tiptoe in,” she says.
GATHER THE COURAGE to bring up the topic with your health care provider; don’t wait for your provider to ask. “I’ve brought it up but haven’t felt acknowledged,” says Karen, who has type 1 diabetes. “But I admit I haven’t pushed it.” Fisher says that if a patient says diabetes is getting to him or her, most providers—even busy ones—will listen. If you are ignored, find another provider. Kate, who has type 2 diabetes, says she switched to a nurse practitioner diabetes educator who “gets it.”
REALIZE IT’S NORMAL to have distress with diabetes. Fisher, who presented his studies on diabetes distress at the 2014 American Diabetes Association annual meeting, says diabetes distress responds to actions that address it directly and targets feelings, beliefs, and expectations around managing diabetes. Getting the fears and feelings out and understanding they’re a normal part of having diabetes helps, he says.
STRIKE PREEMPTIVELY. Learn your distress warning signs, and use trial and error to discover optimal management strategies. “I only recently realized I didn’t have to give so much power to food and glucose levels,” Kate says. She knows that when she starts to retreat from her supporters, she needs to reboot and reenergize herself to start anew.
GET A STEADY DOSE OF EDUCATION AND SUPPORT. The REDEEM and DAWN2 studies showed that sufficient diabetes self-management education and support can lower distress levels. Yet studies continue to show too few people receive sufficient education or support. A 2014 report from the U.S. Centers for Disease Control and Prevention showed only 7 percent of people with newly diagnosed diabetes who have private health insurance received education even though it was a covered benefit.
Health care providers often miss diabetes distress. “Inquiring about the emotional side of diabetes hasn’t been part of usual diabetes care like checking your A1C,” Fisher says.
Distress may rise at critical times—for example, when you progress your treatment, start taking insulin, or develop a complication, says Marti Funnell, RN, CDE, associate research scientist at the University of Michigan in Ann Arbor and a DAWN2 advisory committee member. “People should be told at diagnosis that negative feelings are normal, common, and likely to wax and wane,” she says.
On the flip side, Fisher says, depression is often overdiagnosed among people with diabetes, which has led to inappropriate use of depression medications, some of which can worsen glucose levels. Though some research has proclaimed higher rates of depression among people with diabetes compared with the general population, Fisher says newer studies indicate the rates aren’t any higher.
However, there’s greater prevalence of depression among people with diabetes who follow complex treatment plans or deal with one or more complications. There are certainly times when people with diabetes and their caregivers should be referred to a psychologist, psychiatrist, or social worker.