Many people experience considerable distress about having diabetes and the amount of hands-on management that diabetes requires. This often includes frustration with the ongoing obligations of diet, physical activity, blood glucose monitoring, and taking medicines. Other equally important but less frequently acknowledged stresses can center around fears about the future, concerns about complications, difficulties dealing with caring but potentially intrusive friends and family members, and keeping up with all of the new drugs, treatment options, and related recommendations from the diabetes community. It is no wonder that as a group, people with diabetes report relatively high levels of personal distress, fatigue, frustration, anger, burnout, and feelings of poor mood and depression. Diabetes can feel overwhelming because of the unending demands of self-management.
The distress associated with diabetes and its management can have an effect on diabetes itself. For example, several studies have shown that people with diabetes who report more depressive symptoms have poorer management of their diet, physical activity, oral diabetes drug usage, and blood glucose monitoring, report more family conflict around diabetes, have more contact with the health-care system, and have higher levels of both diabetes complications and death from any cause over time than people with diabetes who do not have elevated levels of depressive symptoms.
The reasons for these associations are not completely clear, but two mechanisms have been proposed. First, research has indicated that distress and symptoms of depression are linked to the production of cortisol, a hormone produced by the adrenal glands. Among other actions, cortisol has been shown to reduce insulin sensitivity and to affect cardiovascular functioning. Second, stress and depression interfere with diabetes management behavior. It can be very hard to keep up with a complicated diabetes routine when you are having intense feelings of tension, distress, sadness, and frustration. So distress and depression can have both biological and behavioral effects on diabetes management. In fact, many clinicians consider a person’s levels of distress and depression to be as important to his or her care as measures of blood glucose, cholesterol, blood pressure, and weight.
In light of the considerable impact of distress on diabetes management—and on a person’s well-being in general—what can be done in response to feeling burned out, overwhelmed, and blue? The good news is that diabetes distress can be managed and reduced if a few important tips are kept in mind. Not every tip will work for every person, because people with diabetes have different personal styles, life contexts, and preferences. But the ideas underlying these tips are applicable to most people with diabetes.
1. Feelings of being overwhelmed and burned out are to be expected. Almost everyone who has diabetes feels frustrated and distressed from time to time, and some more than others. Diabetes is burdensome, and it is normal to react to this burden. Some people feel particularly depressed and frightened when a new development occurs, such as a new eye or kidney problem. They may blame themselves, other family members, or their health-care practitioners, or they may simply feel that they should give up (“What’s the use anyway?”). Others are more likely to feel burned out because of the unending demands of diabetes management. Having these feelings for more than a week or two signals that these feelings need to be attended to, just as other aspects of health and well-being need to be attended to on a regular basis. Disregarding or ignoring one’s feelings often makes matters worse, while paying attention to the intensity and type of feelings experienced often provides a clue for what to do next.
2. Consult your health-care provider. Diabetes distress should be part of the conversation that people with diabetes have with their health-care providers on a regular basis. Admittedly, however, many people feel awkward bringing up issues about distress and feelings of discouragement, particularly when office visits are short and a large amount of material must be covered during any one visit. Furthermore, practitioners often make suggestions for care that overload people by asking them to do too many things too quickly, not explaining things clearly, or proposing a management plan that is not practical and realistic given each person’s unique life context. One can leave a practitioner’s office far more distressed than when one arrived.
While many health-care providers fail to initiate discussions about the feelings a person is having, most know that even the best diabetes plans will not work if the person is distressed, depressed, or burned out, and most will attend to these issues if a person brings them up directly. Sometimes a short course of antidepressant drugs can be helpful; sometimes reworking the management plan or coming up with alternative coping behaviors can address the problem; or sometimes a referral to a behavioral specialist is in order. In many cases, a simple airing of the problem relieves much of the tension and distress and helps put things back into perspective.
3. Talk to family members, friends, or others with diabetes. Put your feelings into words and express yourself. Talking about how diabetes feels is not necessarily whining or complaining; it is sharing what is going on internally in ways that inform others and in ways that force you to articulate your concerns verbally. Talking it out can help a person gain perspective, identify specific aspects of self-management that have become problematic, and make plans to address each aspect of the problem in a focused way. Keeping feelings inside and unexpressed often forces them into an internal box, where they fester and build upon one another. When this occurs, the risk of expression at the wrong time, at the wrong target, or with the wrong intensity increases dramatically.
Seek out others who are understanding about diabetes and are willing to listen without necessarily providing solutions. Telling the tale is often more helpful than finding the supposed solution.
4. Do one thing at a time. When distressed, many people with diabetes attempt to tackle all of their problems head-on or to alter their entire management plan in the hopes of making diabetes more tolerable. They double their physical activity regimen, sharply reduce calories with a new diet, or perhaps purchase a new blood glucose meter as a cue to monitor more frequently. The greater the number of things changed in a management plan at one time, though, the greater the probability that none of them will be accomplished. The lack of accomplishment then increases feelings of frustration and failure, and the process escalates to another level. To deal with diabetes distress effectively, create a list of priorities for change, and address each separately, one at a time.
5. Pace yourself. This tip follows directly from #4. The slower the pace of change, the greater the probability that a goal will be achieved and, even more important, sustained. For example, people who drastically increase their physical activity may do very well for a week or two, even with sore muscles. But the probability is low that they will be able to sustain the program over time. Fatigue will increase, other lifestyle factors will compete for time, and motivation to continue will suffer. The primary goal of most aspects of diabetes management is sustained behavior, not just reaching a target in the short term. A slow pace of change enables the new behaviors to become more easily incorporated into a person’s general lifestyle, and the new behaviors become self-reinforcing because many small goals are achieved sequentially over time. Furthermore, a slow pace enables each individual to experiment with alternatives in ways that make the most sense, and barriers to success are less overwhelming and can be dealt with more slowly and consistently.
6. Behavior change works best when not done alone. Diabetes distress often occurs when diet and physical activity goals are not achieved. In fact, of all the behavioral tasks associated with diabetes management, people with diabetes report that they experience the most distress about these two components of their management plan. A number of studies, however, have shown that for most people, behavior change works best when others are involved. People tend to reinforce each other, and joint actions are usually sustained far longer than actions taken by individuals alone. A related study showed that a weight-reduction program worked best for marital partners when both spouses sought to lose weight together. Studies of smoking cessation have shown similar results.
Some ways to involve others in your diabetes management routine include soliciting members of your household to help remind you to take medicines or monitor blood glucose levels (as long as these individuals are helpful and not critical); walking with friends or family members at a set time each day; and joining a physical activity program at a nearby neighborhood center, school, or gym. By engaging with others, the probability increases that a person’s behavioral goals will be achieved and sustained, and distress about this portion of the management plan will be reduced.
7. Focus on behavioral goals. No person with diabetes can directly control his weight or blood glucose level. A person can consume fewer calories, take blood-glucose-lowering drugs, and expend energy through physical activity, but these are indirect behaviors, not direct methods of weight or blood glucose control. Many people with diabetes become very frustrated with how difficult it is to lose weight, for example, and their frustration increases when difficult diets are adhered to over time with relatively few pounds shed.
The reason is that many factors play a role in weight loss, just as many factors play a role in reducing blood glucose levels. Body size, age, sex, ethnicity, and medicines taken for blood glucose control all influence weight and blood glucose levels. Setting a goal of losing 25 pounds, therefore, is far more frustrating and difficult to achieve than setting a goal of staying on a 2,000-calorie-a-day diet. A person cannot directly control his weight, but he can control the number of calories consumed.
This is an important distinction that can help reduce frustration and distress: Focus on goals that can be directly controlled with behavior. A person with diabetes can control the number of calories he consumes, the amount of physical energy he expends, how regularly he takes his medicines, and how frequently he monitors his blood glucose. Completing all of these tasks regularly as part of an overall management plan will affect his diabetes control if his plan is designed properly. A focus on behavioral goals, then, rather than goals that are less directly controllable, helps people with diabetes stay focused on things that they can do and the goals that they can achieve and sustain. If a person’s behavioral goals have been achieved but his HbA1c, cholesterol, or blood pressure levels remain high, it is time to review his management plan with a health-care provider.
8. Take responsibility for your diabetes. Even though health-care providers play a crucial role in managing diabetes, fundamentally, management is up to the person who has it. This fact can be either overwhelming or empowering, acknowledging full well that it is a tough job in either case. It can be empowering by motivating people with diabetes to be proactive in gathering new information, devising experiments to test how different behaviors affect their blood glucose levels and other important measures, and addressing diabetes management difficulties both on their own and with their health-care providers. Being proactive may involve using a health library, the American Diabetes Association Web site (www.diabetes.org) and other Internet resources, and others in the diabetes community so that information about alternatives and strategies for care can be gathered. It may also involve raising concerns with practitioners and seeking out educators, nurses, physicians, and other health-care providers who specialize in diabetes. Studies clearly show that people who are engaged in their care, who take responsibility for their diabetes, and who are often one step ahead of their health-care providers do much better over time than people with diabetes who remain passive and uninvolved in their care. They are less frustrated, more inquisitive, and more upbeat about having diabetes than those who simply “go along” with what they are told. Holding back and feeling afraid to ask questions or pursue problems independently increases the probability of struggling alone and feeling overwhelmed and overburdened, since far fewer of the tools needed for success will have been obtained.
Putting it all together
As time passes, life changes, diabetes changes, drugs change, and management requirements change as well. Caring well for diabetes requires persistence, motivation, knowledge, and collaboration with family members, friends, and a team of health-care professionals. But keeping on top of the seemingly endless series of personal tasks associated with diabetes can often lead to frustration, fatigue, distress, and symptoms of depression, all of which can have negative effects on diabetes management, outcomes, and general well-being.
It is important to pay attention to these feelings, to use them as signals to take action, and to address them with your health-care providers. Dealing with diabetes distress and symptoms of depression is as important to your diabetes care as any drug taken or any behavior routinely practiced. Awareness of these issues is an inherent part of good diabetes self-management.