Diabetes Distress
When someone has a diagnosis of diabetes, they know that there isn’t any vacation from diabetes. A person needs to think about medications, exercise, technology, eating plans, possible complications that arise from the disease, hypoglycemia as well as having to deal with people who might not understand diabetes almost every day. After some time, this can take a toll on a person’s emotional health. Distress is an expected response from living with any chronic health condition. Diabetes Distress (DD) is the emotional side of living with diabetes.
Diabetes distress is sometimes mistaken for, and is more common than, depression (American Diabetes Association, 2021)
What is the difference between depression and diabetes distress?
Depression is hopelessness about life in general. Sadness and tough feelings about diabetes can occur in diabetes distress due to persistent stresses from living with diabetes. Someone with a depressive disorder may feel like a failure and everything is hopeless. Whereas a person with DD may feel like they are failing at managing diabetes and their efforts of controlling their diabetes are hopeless.
Depression is most often assessed by using a symptom survey or screen that a healthcare provider may complete at a routine checkup. A diagnosis of a major depressive disorder requires a structured clinical interview.
Diabetes distress is an expected part of living with diabetes. Diabetes distress and depression may look similar, but they are very different. Diabetes distress can be managed within the diabetes care setting. When a major depressive disorder is diagnosed, the person will need referred to a behavioral health specialist.
The American Diabetes Association Standard of Care 2024 recommends that diabetes distress should be assessed annually using diabetes-specific validated questionnaire such as Diabetes Distress Scale (for Type 1 and Type 2). It is important that every healthcare appointment include opportunities for the person with diabetes to express how they are feeling about life with diabetes. Monitoring people with diabetes and their caregivers and family members for diabetes distress should be done especially if treatment targets for blood glucose are not met and /or there is an onset of diabetes complications (e.g., non-healing wounds, vision issues, kidney disease). Although greater diabetes distress tends to be associated with a higher A1C, an optimal A1C (less than 7%) is not necessarily an indicator of
low diabetes distress.
When the health care professional (HCP) asks their patients to fill out a Diabetes Distress Scale questionnaire, they are interested in how the person with diabetes is feeling about their diabetes and how it affects their diabetes management. The person with diabetes is asked to think about the last month and to consider the degree of the problem on a scale1-6: from NOT a
PROBLEM to VERY Serious Problem.
Examples include:
- Feeling that I am often failing with my diabetes routine.
- Feeling that diabetes controls my life.
- Feeling that I am not testing my blood sugars frequently enough.
- Feeling that I am not sticking closely enough to a good meal plan.
- Feeling that I might end up with serious long-term complications, no matter what I do.
Once the scale is reviewed and scored, the health care provider (HCP) may look at the highest scored areas and review them with the person. Another appointment may be needed to follow up.
If a particular scale is not available, the HCP may ask questions to start the diabetes distress conversation. “Can you tell me something about what it is like for you living with diabetes recently?” “Can you tell me what bothers you the most about life with diabetes?”
Here are some helpful expectations about keeping diabetes in perspective: Perfect isn’t possible and you don’t need to be.
Having a tough time with a tough disease is normal.
You are not alone if you struggle with diabetes and/or have challenges with the emotional side of diabetes.
It’s not your fault you have diabetes. It’s not your fault that your pancreas does not work right.
Remind yourself of all of the work you are doing to manage your diabetes.
HCPs can help the person with diabetes distress find some ways to make changes that are important to them. The change should be simple and achievable. Talk about what the priorities are and agree about how much time to dedicate to each topic. Certain feelings can be overwhelming, and they might go away on their own without support. But with the screening tools available and community resources, you can find the support that you need.
If you would like to learn more about diabetes distress, go to www.behavioraldiabetes.org for the Behavioral Diabetes Institute. You can complete the questionnaire at home and it will give an automatic score. None of the information is saved, so make a printout. You can bring the information to the health care appointment and have a conversation with your provider to take action.
Resources:
Behavioral Diabetes Institute – Dr William Polonsky
ADA Diabetes and Emotional Health Workbook 2024
About the author:
Dianna Morrow is a certified Diabetes Care and Education Specialist and Registered Nurse at Encompass Health Rehabilitation Hospital of York, Pennsylvania. Dianna is a co-facilitator of the Diabetes Protocol team at Encompass Health.
She is also a member of the Diabetes Coalition of York County.
