Living with diabetes can feel like a full-time job. For some, the stress of self-managing their diabetes can take an emotional toll.
According to a 2009 Diabetes Care article by psychologists William Polonsky, Lawrence Fisher, et al., “Living with diabetes can be tough. In the face of a complex, demanding, and often confusing set of self-care directives, patients may become frustrated, angry, overwhelmed, and/or discouraged. Diabetes-related conflict with loved ones may develop, and relationships with health care providers may become strained. The risk of depression is elevated. As a result, motivation for self-care may be impaired.”
When you feel overwhelmed, it’s human nature to just give up. Instead of becoming more vigilant about their care, people tend to deny or ignore their diabetes. If you deny that you have diabetes and don’t follow a rigorous self-care management regimen, however, you run a higher risk of developing complications down the line.
Learning the ways in which diabetes can overwhelm you can be the first step in letting go of its hold on you. In other words, it’s not just having diabetes that gets you down — it’s the amount of space it is renting in your head that is making you downright distressed.
William Polonsky, PhD, at the Department of Psychiatry, University of San Diego California, and Lawrence Fisher, PhD, from the Department of Family and Community Medicine and the University of California, San Francisco, developed the Diabetes Distress Scale (DDS) to help people with diabetes gain a better understanding of their emotional state. The scale addresses four areas of concern: 1) the emotional burden of having diabetes; 2) the relationship a person with diabetes has with his/her physician; 3) the person’s ability to follow the diabetes regimen; 4) and the interpersonal issues that a person with diabetes might face with family and friends.
Emotional burden of diabetes
According to the DDS, people who are experiencing the emotional burden of having diabetes feel drained mentally and physically on a daily basis; they are angry, scared, and/or depressed when they think about diabetes; and they feel that diabetes controls their lives. They are also likely to express concern that they will end up with serious long-term complications and to feel overwhelmed by the demands of living with diabetes.
Wanda W. has had Type 2 diabetes for the past 14 years. She is concerned because she is depressed most of the time.
“I’ve considered going to a psychotherapist, but then I just get carried away with my life and never quite make that phone call,” she said.
If you feel that diabetes has taken an emotional toll on you, you may want to consider asking your physician for a referral to a mental health counselor who has worked with people with diabetes and/or chronic illnesses. Begin keeping a journal to track your feelings. Try to determine whether your moods fall into patterns. You may also want to identify stressors in your life and try to identify solutions to decrease your stress. Also, try to reframe your negative thoughts about having diabetes. Join a diabetes support group, which most local hospitals host. You can find the listing on the hospital’s website, or you can call their Diabetes Education department for further information.
The second domain of the Diabetes Distress Scale addresses the patient–physician relationship. It is important to have a good relationship with your doctor because you need reassurance that your doctor understands diabetes and diabetes care. Does your doctor give clear directions about how to manage your diabetes? Do you sometimes feel that your doctor doesn’t take your concerns seriously enough? Is it difficult to get an appointment with your doctor?
Susan S. has had Type 1 diabetes for over 40 years. After reviewing the DDS, she remarked that no doctor had ever told she was doing a good job of managing her illness. “Despite the fact that I’m on a pump and a glucose monitor and I take meticulous care of both of those devices and monitor constantly throughout the day…all of those efforts don’t equate into good results. In fact, the opposite is true, that sometimes when I am trying my hardest to be vigilant, everything goes haywire. So I think that living with constant criticism from physicians should be on the scale. I think that physicians themselves are the major stressors.”
She also felt that health-care professionals have unrealistic expectations of people with diabetes.
“We expect people to change their entire being upon diagnosis, change their entire lifestyle, without considering how important self-awareness and readiness to change are. And professionals working with people who have diabetes expect instant results, rather than just being willing to accompany the person on his journey as he learns through living with diabetes.”
Wanda W. has had a good relationship with her endocrinologist.
“He’s got my back,” she said. “I can call him whenever I feel the need and we’ll problem-solve together.”
According to Lisa Blumely, a Certified Diabetes Educator at Providence St. Joseph’s Medical Center in Burbank, California, it is imperative that people with diabetes seek out an endocrinologist for their care.
“Many internists give their best effort to help their patients with diabetes, but their training is limited when it comes to diabetes,” Blumely said.
Fisher envisions that in years to come, diabetes will be treated via a more team-management approach. He points out that many Kaiser Permanente facilities and the Mayo Clinic use a team-management approach.
“I’d like to see this expanded to other medical care facilities,” he said. “The team approach allows for a physician, diabetes educator, support group, and a mental health care professional to work with the patient, thereby giving the patient a sense of wrap-around services.”
According to Fisher, the Diabetes Distress Scale is available to physicians and endocrinologists in the United States, but it is used more widely in Europe. It would be best utilized as an assessment tool for patients to complete prior to an appointment with their doctor. This would allow the physician to pinpoint the person’s emotional state.
“The A1C [glycosylated hemoglobin level] can give us an idea as to how the patient is responding to treatment,” Dr. Fisher said. “But it doesn’t give us a sense of the emotional component, which can certainly affect the way a person with diabetes manages his or her diabetes.”
You can improve your relationship with your physician in a number of ways. For example, come to your appointment with a list of concerns. This will keep the session focused. Be assertive about your concerns and ask your physician to repeat himself if you do not understand what he is telling you. Ask your doctor to write down any changes to your regimen. Furthermore, if your physician is not the right fit for you, consider changing doctors.
The third domain in the DDS addresses regimen-related distress, including feeling that you do not monitor your blood glucose level frequently enough or are generally failing with your diabetes routine. You may lack confidence in your day-to-day ability to manage your diabetes or feel that you are not sticking closely enough to a good meal plan. You may lack the motivation to keep up with your diabetes self-management.
Wanda W. often feels overwhelmed by her self-management regime. She had a particularly difficult time when she was put on insulin about a year ago, even though she believes the insulin has been instrumental in helping her manage her diabetes. Nonetheless, she is worried about how she deals with her diabetes.
“I definitely feel as if I have problems with compliance,” Wanda W. said. “I will think about exercising, but then I’ll just play computer games instead. Playing the computer games helps me to relieve stress, but it’s also an escape.”
Nancy Y. stated that she never checks her blood glucose level. Her father also has diabetes. She stated that on the paternal side of her family, there is a long history of heart disease, obesity, and high cholesterol.
“I primarily eat carbohydrates because I am on a limited income and they’re cheaper,” she said. “I’ve made a huge effort to eat more vegetables, but it is hard. Right now, I am more concerned about my high cholesterol and cataracts.”
Susan S. has the following perspective about self-care.
“If I look at diabetes self-care tasks as little tasks (although there are a multitude of them), I am less likely to become overwhelmed by it. The patients who experience more ‘burden’ are the ones who think, ‘Oh, God, this is a death sentence and I’m powerless to do anything about it.’ This has to do with self-efficacy, our overall beliefs about how much power we have in our own lives to take responsibility for the quality of our life,” she said.
Lisa Blumely, CDE, feels that a lot of people with diabetes blame themselves for not managing their diabetes.
“Ironically, the people with diabetes I’ve worked with who are most compliant are often the ones who are most concerned about their self-care and blame themselves for not doing enough,” Blumely said.
There are a number of ways to improve your self-management. Consider keeping your blood glucose meter with you at all times. Stop trying to be a perfectionist. Just give self-management your best shot. Join a diabetes support group so you can share your thoughts and feelings with the other participants. There’s something very reassuring about feeling that you are not alone.
The final DDS domain examines interpersonal distress. This includes feeling that your friends or family are not supportive enough of your self-care efforts and don’t understand how difficult it is to live with diabetes. You may feel that some friends or family members don’t give you enough emotional support.
These concerns can cause considerable emotional pain. Unfortunately, it is almost impossible to change other people’s perceptions or behavior. However, you may want to make a list of people whom you feel are supportive of you regarding your diabetes and seek them out when you need them. You might also ask your doctor for a referral to a mental health counselor who can help you sort out your feelings. And consider attending a diabetes support group regularly to get the support you need.
Using the Diabetes Distress Scale
The creation of the Diabetes Distress Scale is a step in the right direction. The next step is to increase the number of doctors who use it to get a dialogue going with their patients with diabetes. Without addressing a person’s emotional well-being in relationship to his or her diabetes, a physician cannot get to the root of the person’s self-management concerns. Physicians need to be attuned to the mental health of their patients to truly treat the whole person. Similarly, mental health counselors need to learn more about living with chronic illness to help their clients who have such an illness.
The tide may be turning in the right direction. The need to consider a person’s mental health concerns is being acknowledged in research and in some facilities in the United States and Europe. To help get the conversation started with your health-care providers, view the Diabetes Distress Scale online. Use it to assess your own state of mind, then share it and your answers with the people who help you care for your diabetes.