Do you feel sick and tired of doing everything you’re supposed to do and still feeling like your blood glucose is out of control? Do you feel like you don’t care anymore about managing diabetes and want to give up? If you answered “yes” to these questions, you may be feeling diabetes burnout. It’s something that happens to many people living with diabetes— some point and to varying degrees.
Psychologist William Polonsky, PhD, CDE, and author of Diabetes Burnout, explained that diabetes burnout happens when someone feels overwhelmed and frustrated by his or her condition.
“Most people who have burned out realize that good diabetes care is important for their health, but they just don’t have the motivation to do it anymore,” said Polonsky, president and founder of the Behavioral Diabetes Institute and associate clinical professor at the University of California San Diego. “Many people with diabetes feel at war with their illness,” he explained. “They feel that they are in an ongoing battle to determine whether diabetes will control them or whether they will control diabetes.”
Unlike work, there are no vacations from diabetes. That 24/7 feeling is what can often contribute to the feeling of burnout. It’s nearly impossible to be “on” all the time when it comes to managing your condition. It’s overwhelming when you stop to think of all the things that you’re expected to do — from monitoring your blood sugar levels to watching your diet and weight and fitting exercise in to your schedule — on top of all the other things happening in your life.
Most people have faced diabetes burnout at some point, said Susan Weiner, MS, RDN, CDE, author of The Complete Diabetes Organizer: Your Guide to a Less Stressful and More Manageable Diabetes Life. “I ask my patients not to worry about doing diabetes perfectly,” she added. “Don’t dwell on past numbers that were out of target range. Instead, I ask them to make small changes to improve the way they take care of themselves.”
But experts stress the importance of not giving up and falling into hopelessness and despair. The downward spiral of poor diabetes self-management has obvious consequences. High levels of distress have been linked to lack of self-care and poor glucose control and quality of life, according to a study in Diabetes Care. There’s also an emotional impact.
“If someone is feeling burned out, it’s going to be harder for them to take care of themselves, and that’s when depression and fatigue can really set in,” said psychologist Mark Heyman, PhD, CDE, director of the Center for Diabetes and Mental Health in San Diego.
Heyman points out that there are differences with diabetes burnout between people living with Type 1 and Type 2. “The experience is different because it’s two different diseases. For Type 1 patients, they may be thinking about what they need to do to stay out of the hospital, while Type 2 patients may have a harder time even understanding or recognizing what burnout looks like.”
Signs of burnout
Burnout comes in all shapes and sizes, but increasingly negative feelings toward diabetes care-related tasks are major signals that something is wrong. Feelings can range from anger and depression to frustration and hopelessness.
One of the telltale signs of burnout is when someone stops checking blood sugar levels or does it less frequently than before. There are also individuals who routinely check their numbers, count their carbs, and take their medicines, but feel incredibly stressed out and tired. “I’ve seen patients who give up and the patients who are just tired of managing their diabetes,” said Ginger Vieira, who lives with Type 1 diabetes and has personally dealt with this issue, leading her to write the book Dealing with Diabetes Burnout. “Trust me, there are many people living with diabetes who are feeling some version of the same frustrations.”
Certainly, your health-care provider will examine you for signs of frustration and burnout. He or she may rely on standardized tools to help determine your distress level. There’s a two-question test called the Diabetes Distress Scale (DDS2) that asks respondents to rate on a six-point scale the degree to which the following statements cause distress: Are you feeling overwhelmed by the demands of living with diabetes? Are you feeling that you are often failing with your diabetes regimen?
“If there are any problems identified through these questions, then there’s a follow-up questionnaire,” said Polonsky. The more detailed 17-item questionnaire (DDS17) pinpoints the distress to identify ways to intervene and help.
Support might be found right in your home or down the street. Reaching out to family, friends, and co-workers for support may help you better manage your diabetes. Please don’t try to do everything yourself, advises Weiner. “Speak with family members or friends about joining you in healthy eating or your new exercise routine.”
If your family and friends are not providing what you need, Polonsky developed an “etiquette” sheet available at the Behavioral Diabetes Institute to help those without diabetes better understand what you need. There are 10 tips in all, but the first piece of advice is: “DON’T offer unsolicited advice about my eating or other aspects of diabetes. You may mean well, but giving advice about someone’s personal habits, especially when it is not requested, isn’t very nice. Besides, many of the popularly held beliefs about diabetes (‘you should just stop eating sugar’) are out of date or just plain wrong.”
If you don’t get the support you need from your loved ones, experts recommend finding online support groups like the Diabetes Online Community, tudiabetes.org, or other groups through Facebook.
It’s important to surround yourself with health-care providers who are not judgmental and find ways to encourage positive self-care. There’s nothing worse than going to a doctor or nurse and being reprimanded for not having perfect blood sugar readings, explained Weiner. “I always remind my patients how happy I am that they kept their appointment. Just coming to the office is a big step for many people and we should encourage that type of behavior.”
Avoid being overwhelmed by the multiple diabetes-related tasks needed every day. Instead, find ways to break the big tasks into small ones. “When things get overwhelming, you may not even know where to start, so try breaking it down into small steps,” advises Heyman.
He uses the example of trying to reduce your A1C by 1 percent. “If that is your goal, identify the specific things you can do today to get there. For example, you can check your blood sugar at least four times a day and count carbohydrates at every meal and take insulin to cover.”
Weiner fully agrees and uses the SMART goal approach. SMART means the goal should be Specific, Measurable, Action-Oriented, Realistic, and Timely. If you want to exercise more and enjoy walking, take a look at your calendar for the week and figure out “specific” days and times when you can walk, recommends Weiner. “For example, you could make a plan to take a 20-minute walk on Monday mornings at 6 a.m. and also walk Wednesday and Thursday evenings after dinner. It’s OK to change goals as needed.”
Avoiding the burn
Trying to manage or minimize diabetes burnout is the goal for many. One tip recommended by Weiner is for individuals to get better organized. She suggests using a checklist to keep diabetes care-related tasks from falling off your radar. “You can create master checklists for all sorts of things and supplies, snacks, meal planning, and doctors’ appointments,” said Weiner. “You can keep a running to-do checklist of diabetes-related purchases or tasks you need to complete, and once you find a method that works for you, try to stick with it.”
Staying motivated means accepting that you don’t have to be perfect at managing diabetes. The Joslin Diabetes Center recommends that individuals allow themselves the occasional blood sugar fluctuation — which will relieve some of the stress associated with trying to achieve perfection. “Feeling stressed about living with diabetes is normal, but it’s possible to make peace with your condition,” said Polonsky.
Remove obstacles in your life that might prevent you from achieving your goals. If making healthy salads seems like mission impossible, then visit the salad bar at the local store and make it yourself. If you feel guilty not using your gym membership, cancel it and exercise at home instead. Keeping the same testing and medication schedule can also help you stay within a good range.
Don’t give up
Diabetes burnout is something that you can recover from and conquer, said Heyman. “I help my patients get motivated by thinking about longer-term goals like seeing their kids graduate from college or get married.”
Keeping your frustrations to yourself only isolates you further and makes you feel all alone with your disease. Find someone to listen to your frustrations who won’t judge you or try to fix your situation, said Vieira. “The daily weight of thinking about your blood sugars, thinking about what you’re eating, and thinking about exercise is subtle, but exhausting.”
Another thing that many experts recommend is admitting that you’re sick of diabetes. “I ask others to admit that they’re tired of treating their diabetes,” Weiner said. “When they’re ready to move on, then we work together to create realistic goals that they can tackle one step at a time.”
Want to learn more about diabetes burnout? Read “Extinguishing Diabetes Burnout” and “Diabetes Burnout: What It Is and How to Handle It.”