From Diabetes Forecast
By Erika Gebel, PhD
Checking blood glucose, taking medications, hitting the gym, counting carbs, and cooking up healthful meals: At times, your laundry list of responsibilities may feel overwhelming.
The understandable sense of burden or defeat that may occasionally punctuate your life with diabetes has a name: diabetes distress. Doctors are just beginning to understand this condition and how it affects your health and well-being. What is clear, though, is that diabetes distress is a drag—and that's why researchers are seeking ways of overcoming these negative emotions.
More Than Worry
Diabetes distress is hard to nail down because it overlaps with several related conditions, including depression, anxiety, and stress. "It's messy," says Lawrence Fisher, PhD, professor at the Diabetes Center of the University of California–San Francisco. "It's hard to define and hard to distinguish from the other states."
It was from seeing patients that Fisher first got the hint that this diabetes-specific emotional state exists. "We were really struck by the number of folks reporting high levels of stress and depressive symptoms who weren't even close to reaching major depressive disorder," he says. So if they weren't clinically depressed, he wondered, what were they dealing with? The answer was that they were experiencing unique emotional issues directly related to the burdens and worries of living with a chronic disease. They had diabetes distress.
The condition is characterized by "worry, frustration, concern, and maybe a bit of burnout," says Stephanie Fonda, PhD, a researcher at the Diabetes Institute of the Walter Reed National Military Medical Center. She says these emotions can be related, for example, to concerns about getting proper treatment or communicating effectively with a health care provider. Fonda says a person with diabetes distress may wonder if anyone understands how tough it is to have diabetes and think, "I'm tired of being sick all the time."
These feelings are not rare. Fisher's research suggests that, in any 18-month period, between a third and a half of people with diabetes will experience diabetes distress. That's a problem for both emotional and physical well-being because diabetes distress is linked to poor health outcomes. A 2010 study in Diabetes Care reported that people with higher distress levels were more likely to develop high blood glucose than those with less distress. Someone who is burned out on diabetes might be less likely to take medications to lower blood glucose, says Fisher, who led the study. He also found that higher blood glucose levels seemed to raise the risk of distress. "If I saw my A1C go up, I might get more distress," explains Fisher.
When trying to determine if diabetes distress is likely to cause health problems or prevent people from taking their medication, Fonda looks for signs of burnout. "They say things like 'Nothing I do works' or 'I'm taking these pills, but they aren't doing anything for me,' " she says. "If they believe that, then they aren't going to take them."
Because distinguishing diabetes distress from related conditions can be challenging, Fisher and colleagues developed a special test that aims to identify people burdened by distress. The test, which health care providers give to patients, covers four general areas.
The first is "regimen distress," says Fisher, which he calls "the distress of having to do the diet, manage the exercise, take the medications, etc."
The second test section focuses on concerns about a future with diabetes and the possibility of developing complications.
The third part looks at whether a person is worried about the quality of care he or she is getting from doctors and the cost of that care.
Finally, Fisher's test checks for "social burden." Some people mistakenly believe, for example, that people with diabetes are to blame for developing their disease because they ate too many sweets. There's a "stigma associated with the disease," Fisher says, and that can take a toll.
The test is designed for people with type 2 diabetes, but Fisher is working on versions specifically for people with type 1 and for caregivers. Fisher says diabetes distress is at least as common among caregivers as with people who have the disease. Fears about low blood glucose (hypoglycemia) are mainly what distinguish distress in type 1 from that in type 2. "You don't hear a lot of adult type 2s worried about hypos," says Fisher. With type 1, hypoglycemia can be dramatic, frequent, and sudden. That leads to concerns about driving and other activities, which can blossom into diabetes distress.
Diabetes distress may not necessarily require a doctor's care, says Fisher. He considers occasional bouts of distress normal for people with diabetes. "Sometimes it gets out of hand, and it can have consequences, but for the majority, it's part of having diabetes," he says. For many people, simply taking things one step at a time can be helpful, Fisher says, rather than tackling a new exercise routine, meal plan, and blood glucose–monitoring regimen all at once. He also suggests making changes slowly, so as not to get discouraged when results don't come quickly. Fisher encourages people to speak up and talk about their diabetes, with a health care provider as well as family members and other people with diabetes.
Fisher is wrapping up a study that tests two ways of reducing diabetes distress. One is to "improve diabetes management so people will have less to worry about," he says. "The other way is to target the distress directly," with cognitive behavioral "talk" therapy. This structured approach trains people to become aware of negative thoughts and to address them in a productive manner.
Another way to reduce distress may be to set appropriate health-improvement goals. Fonda uses an old joke to explain this tactic: "How do you eat an elephant? One bite at a time." She encourages people with diabetes to focus on small, discrete goals. Vague or unachievable goals, such as trying to lose a large amount of weight in a short time, can cause frustration and pain, Fonda says. For peace of mind, it's important to redefine success, she says: "Any progress toward a goal is success."
We asked three members of the Diabetes Forecast Reader Panel whether they've experienced diabetes distress and how they coped. Here are their stories.
Accept that you can't control everything
Sherry Reynolds, RN, CSPI, was diagnosed with type 2 diabetes about two years ago and, as a nurse, she usually feels pretty on top of it. That changed last December, when Reynolds had a serious asthma attack that sent her to the doctor, who prescribed steroids. These medications tend to raise blood glucose levels. By the fourth day, Reynolds's blood glucose was over 300 mg/dl. "At that point I was, for the first time since I was diagnosed as a diabetic, quite fearful," she says. "I had done all of the right things and all of the tricks I know to do as a nurse to keep my blood sugar in check, including increase my medication, and nothing worked." Reynolds says that was her true moment of awakening—realizing that with diabetes she can't control everything. "This has been the only time that I have been distressed over my disease and how it can 'control' me rather than [my maintaining] it." Yet, Reynolds generally keeps things in perspective. "I'm not pleased with [diabetes]," she says, "but understand that as we age, bodies do tend to wear out and must be dealt with."
Look for support from people who can relate
Every night, Sarah Howard or her husband gets up to check the blood glucose of their 8-year-old son, who has type 1 diabetes. Each morning, they check to see if he is still breathing. They worry that he might not be because of "dead-in-bed" syndrome. In this unusual event, someone with type 1 who showed no sign of illness the evening before is found dead in the morning. Maybe checking their son frequently qualifies as diabetes distress, Howard says, although part of her thinks it's just prudent. In another instance of distress, "when I first met my son's teacher, I broke down in tears and had to leave the school," she says. "I just was not ready to let him go and hand him over to someone else all day." But she was able to deal with it. "I went online to see if others had dealt with this and got some support that way," Howard says. "It has worked out fine.
Tap into faith and family
"I don't worry about these diseases. I just get weary fighting them. And discouraged at times," says John Greller, who has lived with type 1 diabetes for about 40 years. "Did I ever experience frustration and disappointment about having and treating diabetes? Of course," he says. "As a consequence of diabetes, I've experienced end-stage renal disease, a failed kidney/pancreas transplant, a successful living-donor kidney transplant from one of our sons, and numerous other complications from this disease." For Greller, the people in his life and his religion have been a big comfort. "I am able to cope with it because of my faith, my dear caregiving wife, Jane, family, friends, and a wonderful medical team over all these years."