What Is Diabetes Distress?

Nursing professor Kathryn Evans Kreider describes diabetes distress as “an emotional state where people experience feelings such as stress, guilt, or denial that arise from living with diabetes and the burden of self-management.” 

Symptoms of diabetes distress include lack of motivation, burn out, feeling overwhelmed, frustrated, defeated, angry, lonely, and slacking on proper self-care. While that may sound an awful lot like ordinary anxiety or depression, diabetes distress is a unique emotional response to the challenges of managing diabetes. Unlike mood disorders, diabetes distress cannot be treated effectively with medication. However, effective non-pharmaceutical approaches are available.

The Diabetes Distress Scale: A Helpful Tool 

Folks with diabetes have a higher risk of death and worse overall health. Diabetes distress is one factor that can contribute to inadequate self-care and associated negative health outcomes. Skipping medication, missing medical appointments, eating unhealthy foods and refusing to exercise are all aspects of diabetes distress that can worsen the condition.

The Diabetes Distress Scale, a screening tool that assesses emotional distress, looks at how folks react to diabetes and the struggles that accompany the diagnosis. Many diabetes patients feel angry or scared. They feel like their doctors don’t care enough, they feel misunderstood by family and friends and out of control of their eating habits. 

Patients and medical professionals can use the Diabetes Distress Scale to pinpoint certain obstacles and concerns related to diabetes, potentially helping to better manage the condition and prevent health complications. 

Anna Norton’s Story

Diagnosed as a teenager, 45-year-old Chicagoan Anna Norton, founder and CEO of the nonprofit DiabetesSisters, describes her life with diabetes as a “rollercoaster” over the past 27 years. As a young adult, Norton said that she neglected many aspects of her life because of her condition.

“This caused stress and anxiety, and rather than manage my diabetes healthily, I mismanaged it,” she told MedTruth by email. When she was diagnosed with diabetes at 18, she had to learn how to navigate her new life. In 2008, she founded DiabetesSisters after discovering how little education was available for women with diabetes. Through education and support services, Norton’s organization offers diabetic women a sense of community and hope. 

“I learned ways—with the help of my endocrinologist—to incorporate diabetes into the background of my life. This approach allowed me to branch out and live my life, always knowing diabetes was there, but realizing that there were other components that made me who I am,” she said. 

Over the years, Norton’s relationship with the disease has evolved and she has learned how to manage her emotional responses.

Diabetes Distress and COVID-19

It’s no surprise then that for some folks, the pandemic has made dealing with diabetes more difficult. The pandemic has created fear and anxiety in Norton’s life as early reports of people living with diabetes were grim. Folks with diabetes, especially those with type 2 diabetes, are more susceptible to infections.

“Early on in the pandemic, I made it a duty to learn about COVID-19, follow guidelines set for by the CDC and my personal health team and make decisions based on my personal living situation,” she said. 

Due to this, Norton’s depression hasn’t increased during the pandemic and she’s been able to manage her mood properly. Quarantining and sheltering in place has taught Norton new things about herself and has taught her to do things that are beneficial to her physical and mental health. 

“I have continued to practice physical activity—initially through Zoom classes—as well as walks in my neighborhood. A few months ago, I branched out to outdoor exercise classes, which I participate in four to five times a week. This has worked wonders to keep my mind and body healthy, allowing for socialization (distanced, of course!) outside of my family,” she said.

During the pandemic, Norton has had two medical appointments—one in person and one via telemedicine—as well as lab work in person. 

“I think my medical team has been proactive in making sure I stay healthy. They have shown their commitment to me by being available by phone and email. This has provided much comfort to me, which in turn, relieves my stress and anxiety,” Norton said.

Image of a telemedicine appointment.

How to Cope With Diabetes Distress 

The following approaches, according to the CDC, have been shown to be helpful for managing diabetes distress:

  • Seek diabetes care from an endocrinologist. As hormone specialists with advanced training, they’re likely to have a deeper understanding of diabetes challenges than your regular doctor.
  • Ask your doctor to refer you to a mental health counselor who specializes in chronic health conditions.
  • Get some one-on-one time with a diabetes educator so you can problem-solve together.
  • Focus on one or two small diabetes management goals instead of thinking you have to work on everything all at once.
  • Join a diabetes support group so you can share your thoughts and feelings with people who have the same concerns (and learn from them too).

Also be sure to check out the CDC’s “10 Tips for Coping with Diabetes Distress.” 

Diabetes Self-Care Strategies During COVID-19

  • If you’re unable to travel to get prescriptions filled, keep extra glucagon or glucose tablets on hand in case you develop low blood sugar. 
  • Make sure that you have extra insulin pens on hand.
  • Stay in touch with your doctors and monitor your hyperglycemia, as uncontrolled blood sugar levels affect the immune system.
  • Keep up to date with proper CDC guidelines. Regular exercise, healthful nutrition and restful sleep are all protective measures for diabetics concerned about COVID-19.

Dealing with diabetes isn’t easy, but it doesn’t have to take control of your life.