What is Diabetes Distress?

At some point, almost everyone with diabetes will experience a degree of diabetes distress.  It’s expected and completely understandable, especially for those on intensive medication and insulin regimens. Having diabetes is not just about checking blood sugars, counting carbs, taking medications, and giving insulin. People also have an emotional relationship with their diabetes. These feelings around their diabetes can fluctuate throughout their lifetime.

Sometimes a person might have a great day, when their blood sugars on mostly on target, they don’t miss any of their medications and insulin, plus they made it to the gym. But the next day or week or month may feel like a complete mess, with blood sugars all over the place. These blood sugar swings are due to a variety of different reasons, many of which may be out of the person’s control.

Regardless of where a person is with their diabetes self-care, the emotions that bubble up, need to be acknowledged and recognized both by the person with diabetes and the health care provider.   

When diabetes self-care all starts feeling like it’s too much or like it’s out of control, that’s when we might say a person is experiencing diabetes distress.

You can determine if a person is experiencing diabetes distress by observing self-care behaviors and asking questions. Or you can use a standardized assessment tool to determine how much distress a person is experiencing in four different areas of diabetes self-care. Please see this link to download the Diabetes Distress Scale and other psychosocial screening tools.

The four areas of Diabetes Distress include:

Emotional Distress – Feeling like they are not doing enough; like they are failing and out of control.

Physician-related distress – Provider doesn’t understand diabetes.

Interpersonal Distress – Friends and family don’t really get it, or are critical, or don’t want to hear about diabetes.  Can often be co-associated with depression.

Regimen-related distress – all the daily stuff a person has to do to self-manage their diabetes. Regimen-related distress is the most common kind of diabetes distress, especially for those living with type 1 diabetes.

Health Care Professionals can take an active role in identifying Diabetes Distress

We can start by asking this question, “What is most driving you crazy about your diabetes right now?” or “How are you doing with your diabetes?” while listening carefully to their response and evaluating their degree of distress.

We can also look at self-care behaviors to identify distress:

• A person may not be giving bolus insulin before meals when they used to in the past
• They disconnect from their CGM for extended periods of time.
• A surprise elevation in their blood sugars 
• Expressing feelings of anger, discouragement, or frustration.
• They may think that they are the only ones going through this, that everyone else with diabetes has it figured out, so what is wrong with them?

Sometimes diabetes distress can lead to burnout or be co-associated with burnout.  Sometimes, it may be hard to tell the difference. Don’t worry about figuring out if it’s burnout or distress. What’s most important is to recognize that this person is having trouble coping and to provide active listening and help with problem-solving.

What is diabetes burnout?

Diabetes burnout is an emotional reaction that is usually more intense than diabetes distress. A person in the state of burnout is someone with diabetes who has grown tired of managing their condition, then simply ignores it for a period of time. 

Sometimes I refer to burnout as taking a diabetes vacation. 

This vacation might be a weekend trip, a week trip, or a long-term sabbatical. Diabetes burnout looks different for everyone.  Diabetes burnout is a normal reaction to living with diabetes.  I am not saying it is a good thing, or we want people to feel burned out.  We want to recognize that managing diabetes is a lot of work and sometimes people just take breaks from diabetes self-management. 

As health care providers, we can support people experiencing diabetes distress or burnout. According to Mark Heyman, PhD, CDCES, here is an approach he has found helpful.

1. Ask how they are doing and listen for emotions or actions that indicated diabetes distress.
2. Help them recognize there are 2 parts to it
   1. Emotional reaction – Feelings of being distressed or burned out. A person might be thinking, “If I ignore my diabetes for a while, it might go away or the distress might go away.”
   2. Behavioral reaction – when a person feels distressed or burned out, they might ignore the diabetes as a way to manage that stress. 
3. Recognize how they are feeling and reassure them that their reaction makes sense.
4. Then explore if they could consider separating the emotion from the behavior.
   1. Yes, you feel burned out but can you still check blood sugars and give yourself insulin?”
   2. We can help people recognize the feeling of being burned out and encourage them to make adjustments to their self-care response, ie  “I am going to manage my diabetes anyway, even though I am completely frustrated and burnt out.”

As health care professionals, we need to check in with people about their distress on a regular basis and provide support.

We need to reassure them that management of diabetes isn’t easy, but they are not alone. There are lots of other people with diabetes experiencing the same feelings.

We might say something like, “Managing diabetes is hard work, but we believe in your ability to make small changes to get to a safer place.  You don’t have to move mountains; you just need to take a baby step.“

Let’s remind them, that having diabetes is like getting a job you didn’t ask for. You have to do the work of a body organ, a pancreas. that requires 24 hours a day of attention, without any pay or vacations. Sincerely focus on their successes, no matter how small, and reinforce our belief in their ability to move forward. We got this.

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Special thanks for the Team from Quin for hosting this interview. To learn more about Quin, click here.

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Want to learn more about this topic?

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This presentation will include the latest information on Social Determinants of health, assessment strategies, and approaches. We will explore the psychosocial issues that can discourage individuals from adopting healthier behaviors and provides strategies to identify and overcome these barriers. Life studies are used to apply theory to real-life situations. A great course for anyone in the field of diabetes education or for those looking for a new perspective on assessment and coping strategies.

Objectives:

1. State strategies to assess and address social determinants of health
2. Discuss health care delivery systems using a person-centered approach
3. List screening tools that can help detect depression, trauma, and cognitive decline
4. Describe psycho-social and emotional barriers to diabetes self-management
5. Provide strategies for healthcare professionals to identify and overcome barriers to self-care

Intended Audience:  A great course for healthcare professionals in the field of diabetes education looking for a straightforward explanation of identification and treatment of hyperglycemic crises.

Instructor: Beverly Thomassian RN, MPH, CDCES, BC-ADM is a working educator and a nationally recognized diabetes expert.

Enroll in our entire Level 2 – Standards of Care to join us for the below 2022 Live Webinar Updates. All courses air at 11:30 a.m. (PST)

• December 15, 2021 – Hyperglycemic Crises, DKA & HHS Standards | 1.0 CE
• December 21, 2021 – Assessing and Promoting Well-Being: From Population Health to a Person-Centered Approach Standards | 1.5 CEs
• February 3, 2022 – ADA Standards of Care | 2.0 CEs
• March 24, 2022 – Meds Management for Type 2 – 1.5 CEs
• March 29, 2022 – Lower Extremity Assessment 1.5 CEs
• April 26, 2022 – Microvascular Complications, Eye, Kidney Nerve Disease 1.5 CEs
• April 28, 2022 – Critical Assessment of Diabetes Patient 2.0 CEs
• May 10, 2022 – Cardiovascular Disease and Diabetes Standards 1.5 CEs
• May 12, 2022 – Older Adults and DIabetes 1.5 CEs
• May 17, 2022 – Tots to Teens – Diabetes Standards 1.5 CEs
• May 19, 2022 – Pregnancy and Diabetes 1.5 CEs
• May 26, 2022 – Hospital and Hyperglycemia 1.5 CEs
• July 21, 2022 – Setting up a Successful Diabetes Program 1.5 CEs

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