People with diabetes have to think about their condition and make treatment decisions constantly — and all that extra work and worry can lead to psychological distress at times.
“Diabetes distress” isn’t the same as depression, however, diabetes experts note. It’s a condition unique to the 24/7 demands that come with diabetes, particularly for people dependent on insulin.
“The day you develop diabetes, it’s like the universe just handed you a new full-time job that you have to do in addition to whatever else you’re doing. It’s a special job that has a big impact on the rest of your life. There’s no pay and no vacation,” said William Polonsky, president of the Behavioral Diabetes Institute in San Diego.
Alicia McAuliffe-Fogarty, vice president of lifestyle management at the American Diabetes Association, put it this way: “Diabetes distress is the extra burden that people with diabetes have to carry. They have to do everything that other people do — take care of work, family, finances — and in addition they have to make sure to check their blood sugar, remember to take their medicine and/or adjust their insulin doses, count carbohydrates when they eat.
“It’s a day-to-day and minute-to-minute burden. It’s doing everything ‘right’ and still seeing your blood sugar levels go up,” she added.
Diabetes distress is a range of different emotional responses that come with dealing with the burdens of caring for diabetes, Polonsky explained.
“It’s being fed up and overwhelmed with the demands and concerns of diabetes. It’s feeling powerless in the face of diabetes. It’s knowing that despite your best actions, sometimes those [insulin] numbers go up and down and it seems beyond your ability to influence. And it can negatively influence one’s quality of life,” he added.
The phenomenon hasn’t been well-studied — Polonsky said he and his colleagues are in the middle of a study on diabetes distress that will hopefully answer some questions about the condition.
He said diabetes distress probably affects about 30 percent of people with diabetes at some point in their lives.
“It’s not everybody, and it’s not all the time, but it’s pretty darn common, and a whole lot more common than depression” among those with diabetes, Polonsky added.
Diabetes distress and other psychological conditions are common enough that the American Diabetes Association added a section to its Standards of Medical Care in Diabetes – 2017 guidelines on screening and treating people with diabetes for distress, depression and other mental health concerns.
The new guidelines, published recently in the journal Diabetes Care, suggest that providers screen all of their diabetes patients with standardized tests for these conditions.
A demanding juggling job with no breaks
There are two main types of diabetes — type 1 and type 2.
People with type 1 diabetes don’t make enough insulin — a hormone the body needs to use the carbohydrates in food for fuel. Because of this, people with type 1 rely on insulin injections or insulin delivered through a tiny catheter inserted under the skin and then attached to an insulin pump worn outside the body. People with type 1 diabetes using shots may need five or six insulin injections daily.
In people with type 2 diabetes, the body is no longer able to use insulin properly. Most (95 percent) of diabetes cases involve the type 2 form of the disease. Sometimes, people with type 2 diabetes also need to use insulin injections.
However, using insulin is a difficult balancing act — too much or too little can cause problems, even life-threatening ones.
When blood sugar levels drop too low from too much insulin, people can become disoriented, and if levels drop even further, they may pass out. Blood sugar levels that are too high and left untreated over time can cause complications such as kidney troubles, eye problems and heart disease.
To keep track of blood sugar levels when using insulin, most people rely on glucose meters and a lancing device that pricks the finger to draw out a drop of blood. This may be done as few as 4 times a day, or as many as a dozen or more times daily, depending on how blood sugar levels are fluctuating.
And, many factors besides insulin can influence blood sugar levels. Food, alcohol, physical activity, emotions such as stress, and illness all can cause unpredictable changes in blood sugar levels.
It helps to find strength in numbers
Both Polonsky and McAuliffe-Fogarty said it’s important to recognize and treat diabetes distress because it can have a negative impact on blood sugar management.
“In some studies, diabetes distress can impact diabetes care more than depression,” McAuliffe-Fogarty said.
Antidepressants aren’t likely to help someone with diabetes distress, according to Polonsky.
McAuliffe-Fogarty suggests checking in with your health care provider so you can go over your current diabetes management regimen. It’s possible that changes in your management might help, she said.
Or, it might help to have a visit with a diabetes educator to go over some of the basics again, she recommended. Many people with type 1 diabetes are diagnosed as children, and as adults may not realize they’re missing some of the basics of diabetes education.
“Maybe pick one or two things that would make the most impact on your management and focus on those one or two small things, and you’ll likely achieve those goals. Then set one or two more goals and move along like that — not everything needs to happen at once,” McAuliffe-Fogarty said.
It’s also important to look for “evidence-based hope,” Polonsky said. Many studies have suggested that with consistent modern management of diabetes, many people can live well with the disease.
“Most people have heard the scary messages, but with good care, the odds are pretty good you can live a long and healthy life with diabetes,” he noted.
Both experts agreed that support is an important component of treating diabetes distress. “You don’t want to do diabetes alone. If you have someone who’s rooting for you, that really helps,” Polonsky said.
He said parents or spouses can give a person with diabetes a break by taking over the management of the disease for a little while. It gives them a “diabetes vacation.”
For some, distress can get more serious. Depression isn’t always easy to spot in someone with diabetes. And some of the physical signs of diabetes, such as low energy, could signal that someone’s blood sugar is out of whack, Polonsky explained.
McAuliffe-Fogarty said about one in every four or five people with diabetes will experience depression at some point.
She said signs that suggest you need to speak with a mental health professional include: changes in appetite and sleep patterns, having no interest in activities you once enjoyed, social isolation, feeling persistently sad or hopeless, and having a down mood on more days than not.
Learn more about diabetes distress from the American Diabetes Association.