Feel like diabetes is controlling you? Feel frustrated by dietary limitations? Anxious about how diabetes complications could impact your future? Are you weary of all you need to do to care for yourself? Whether you have type 1 or 2 diabetes, these could be symptoms of diabetes distress.
What Exactly is Diabetes Distress?
According to the American Diabetes Association, diabetes distress includes the fears, worries, and burdens associated with the diabetes experience. These stresses could include concerns about glucose levels, insulin doses, device functionality, and how the disease interferes with daily life, among others.
Diabetes distress is not the same thing as clinical depression, which is considered a mental health disorder; instead, it’s an emotional reaction to managing the disease. And while it may look like depression or anxiety, it can’t effectively be treated with drugs, according to the Centers for Disease Control and Prevention (CDC).
Diabetes distress can affect people with any type of diabetes. The CDC notes that “in any 18-month period, 33 to 50 percent of people with diabetes have diabetes distress.” One 2022 study reported that as many as 42 percent of people with type 1 diabetes experience diabetes distress, while in people with type 2 diabetes the number is about 36 percent.
Diabetes can take the form of feeling overwhelmed, burned out, guilty, defeated, being in denial, angry, fearful, or frustrated, according to a 2017 article. It could be a loss of interest or motivation in maintaining diabetes-related self-care, such as being lax about taking insulin or medications, eating healthfully, or exercising.
Why Diabetes Distress Needs Treatment
As you’ve no doubt been told by your care team, successful management of diabetes requires a constant commitment to self-care, primarily in the form of taking all medications and/or insulin as prescribed, following a healthy diabetes-oriented diet, and participating in regular exercise.
The concern is that when people are suffering from diabetes distress they don’t adequately manage their disease. They aren’t exercising, eating healthfully, or taking medications as recommended, and they aren’t monitoring blood glucose frequently enough. And this can lead to elevated blood glucose levels, which will likely just lead to more distress.
This is especially problematic when distress leads to diabetes burnout, usually because even if a person with diabetes is doing their best, their blood glucose levels are both unpredictable and disappointing. That, in turn, can lead to disengagement from appropriate self-care and unhealthy outcomes.
How to Tell if You Have Diabetes Distress
If you can relate to some of the identified symptoms, the first thing to do is get help from your care team. The CDC recommends seeing an endocrinologist for diabetes care since they have a deeper understanding of the challenges you’re facing than your internist. An endocrinologist or diabetes educator also has the tools to be able to distinguish diabetes distress symptoms from depression or anxiety.
One potential tool for self-diagnosis is a 20-question survey called the Problem Areas in Diabetes Survey, commonly known as PAID. The PAID questionnaire, which you can find here (PDF), is a series of questions in which the respondent is asked to indicate the degree to which each item is a problem, ranging from 0, or not a problem, to 4, a serious problem. The scores are then tabulated to generate a total score out of 100. Scores of 40 or more indicate severe diabetes distress.
When used by clinicians, it can help them better assess not only if you do have diabetes distress, but also what the specific problem areas are. It’s also something an individual could take on their own to get a specific understanding of how they’re feeling.
The Diabetes Distress Scale is a similar tool. Created by the Behavioral Diabetes Institute, these are separate assessments for adults with type 1 and type 2, as well as for partners of adults with type 1 diabetes and parents of teens with type 1 diabetes. While they’re intended as tools for professionals, you could self-administer the appropriate survey to identify your areas of greatest concern. To get an idea of how it could be used, here’s how one Diabetes Daily writer experienced the survey. It’s something you can also do regularly over the years to check in and see how you’re feeling and adapting — and where you need to pay attention.
How to Address Diabetes Distress
Inevitably, people seeking help are going to get advice that boils down to “take better care of yourself,” including keeping blood glucose at optimal levels, eating a nutrient-dense diet, exercising regularly, maintaining optimal weight, minimizing alcohol use, and getting enough sleep. And all these pieces of advice are certainly valid.
But people with diabetes distress would do those things already if they were feeling better. These should be the goals. What may be more useful, at least initially, are suggestions from the advocacy group diaTribe:
Seek support from friends or family and let them know how you’re feeling
Consider talking to a mental health professional
Get involved with a diabetes support group
Change up your routine
Try using new diabetes technology — like a continuous glucose monitor (CGM) or automated insulin delivery system — that can reduce or simplify some of the day-to-day diabetes tasks. Check your health insurance to see if it will cover a new diabetes device.
Set realistic goals and don’t expect to be perfect
Get involved in advocacy or service projects
Another good source with tips for coping with diabetes distress is this list from the CDC. For instance, if finances are causing you constant stress, they suggest finding out if help is available to manage the costs of your diabetes medications and supplies. They also suggest turning to your healthcare providers about your feelings so you can tap into their expertise to problem-solve concerns or be directed to a healthcare provider who can give you more specific help.
Your well-being is dependent on how well you take care of yourself. Being in the best possible mental shape so that you are dedicated to taking the essential steps every day to control your diabetes is essential. Pay close attention to your feelings and behavior. If you have any concerns that you have symptoms of diabetes distress, it’s imperative to get the help you need to diagnose your condition and receive the guidance that’s needed for you to overcome it.