Dealing with Diabetes Distress
Living with a chronic disease isn’t easy. But there are ways to manage diabetes to reduce burnout and frustration, anger, anxiety and even depression.
Can you recover from "diabetes distress" and live a happy and comfortable life? Retired teacher Marlene Schuldenfrei, 71, of Long Island, New York, says yes. Diagnosed with prediabetes and then full-blown type 2 diabetes six years ago, she admits, "When the doctor told me I had diabetes and needed to take medication, I was devastated. I cried hysterically on and off all day."
Schuldenfrei, who was not afraid of regular blood tests, was terrified about doing finger sticks to test her blood glucose, and worried about worst case scenarios like losing her sight or having her toes amputated. One day, totally beside herself, she flung her glucose monitor across the room.
"When I was first diagnosed, I knew absolutely nothing about diabetes."
The first few months were very difficult, even though physically she was feeling fine. She met with a diabetes educator who explained what diabetes was, how it affected the body, what she needed to do to manage it and ways to modify her diet.
"When I was first diagnosed, I knew absolutely nothing about diabetes and didn't pay much attention to nutrition in general. I was never a sweets lover, but pretzels, bagels and other high carbohydrate foods were my ruination. Once I started to change the way I ate, I began to lose weight and eventually my A1C (which measures your average level of blood sugar over a three month period) reached a more normal range."
What Is Diabetes Distress?
According to the American Diabetes Association, diabetes distress is the term used to describe negative emotional experiences that people with diabetes face from living with the diseases' demands. First identified almost twenty years ago at the Joslin Diabetes Center in Boston, it is manifested by feelings of frustration, defeat, or of being overwhelmed. One of the largest studies showed that one in five people living with diabetes experience severe diabetes distress. But it is on a continuum, more common in people who take insulin than in those whose disease can be managed with medication or diet alone.
In reality, experts agree, diabetes distress, whether severe or a milder version, is experienced by many people, no matter how their disease is being treated. For some individuals, the condition can progress to diabetes burnout, in which you stop doing what you need to do, such as monitoring blood glucose levels or making healthy food choices. This is often accompanied by feelings of guilt, self-blame and anger.
Diabetes distress is the term used to describe negative emotional experiences that people with diabetes face from living with the diseases' demands.
Diabetes distress and burnout can lead to adverse medical and psychological outcomes such as suboptimal self-management, elevated A1C levels, more frequent episodes of severe hypoglycemia (low blood sugar) and impaired quality of life. Because of this, the American Diabetes Association's Standards of Care in Diabetes — 2024 recommends annual screening for diabetes distress.
According to Jeffrey S. Gonzalez, PhD, a clinical psychologist and Professor in the Department of Medicine (endocrinology) at Albert Einstein College of Medicine in Bronx, New York, "Diabetes distress is understandable because the disease involves a high level of self-management and decision making on a day-to-day basis. Treatment has evolved with the widespread use of continuous glucose monitors, insulin delivery devices and other advances, and we have seen improved health outcomes, but managing the disease still puts a huge burden of responsibility on the individual patient."
People with diabetes also struggle with two difficult issues — the financial aspects of the disease, and the stigma, discrimination and poor understanding of what a person with diabetes is experiencing. Dealing with others reactions, including loved ones who may say insensitive things like, "If you hadn't eaten so much junk food over the years, you wouldn't be diabetic" or "Just don't eat anything with sugar and you'll be fine" can be upsetting, humiliating and infuriating.
Treatment of Diabetes Distress and Burnout
Gonzalez says that "Older adults who are living with long-term dysregulated blood glucose and whose lifestyle may change over time (less able to exercise, perhaps, due to aging) are more likely to need modifications in the regimens that have worked well for them in the past. This can lead to a resurgence of distress."
He adds, "Because we consider diabetes distress and burnout not a mental health diagnosis but rather a normal reaction to the emotional toll of living with a chronic disease, helping people to deal with it should be part of comprehensive diabetic care." When people are having difficulty sleeping, for example, which is often construed as one of the signs of anxiety or depression, "we need to look at it in the context of their diabetes. They may be getting up to eat something because they are frightened about their blood sugar going too low during the night. If they aren't exercising, it may be because they are overwhelmed with meal planning, testing their blood and managing all the things associated with diabetes rather than being a sign of depression."
Practical guidance that identifies and supports self-management techniques and gives tips or suggests products that can reduce the stress of dealing with the disease are helpful in reducing emotional exhaustion and angst.
Even with excellent care from diabetes clinicians, cognitive behavioral therapy or other types of psychotherapy with a mental health professional can be helpful.
Susan Guzman, PhD, cofounder of the Behavioral Diabetes Institute in San Diego, California, states that "We as clinicians are trained as 'fixers' and 'doers.' We see a problem and we jump to fix it. But over time, our research has shown that the best way of helping a person with diabetes is to have them define their challenges and come up with their own goals and strategies ... We have learned to spend more time listening and less time "doing."
Findings from a study, the EMBARK trial, presented at the American Diabetes Association 2023 Scientific Sessions, found that for people with type 1 diabetes, interventions that integrated an educational and emotional approach were the most effective in reducing distress. For people who are really struggling to overcome burnout, even with excellent care from diabetes clinicians, cognitive behavioral therapy or other types of psychotherapy with a mental health professional can be helpful.
And interestingly, clinicians sometimes recommend a "short, safe break" from diabetes management, such as testing glucose a bit less frequently or being somewhat more lenient with dietary choices. Since people with diabetes tend to do this anyway, giving "permission" lessens the guilt and usually will provide motivation for people to redouble their efforts once the planned break is done.
Recovery, and Potentially, Remission
How did Shuldenfrei "recover" from diabetes distress? She has been able to come to terms with the fact that she has a chronic disease but that she hopefully can sidestep major complications if she does everything she is supposed to do and avoids doing the things that are not good for her.
After three years on medication, she asked her doctor if she could reduce or stop taking her pills, and he reluctantly agreed to give it a try, saying if her numbers went up, she would have to start on the meds again. Watching her diet carefully, she has been able to maintain good glycemic control without medication for several years now.
Because diabetes is a progressive illness, people with diabetes can go into remission, but if eventually there is a rise in their A1C, they might potentially need to go on medication again. Because of this, Schuldenfrei is almost compulsively careful about everything she eats, and continues to regularly monitor her blood sugars at home.
"It doesn't bother me because I am used to living this way, and I am not someone who loves food," she says. It is more important to her that she is able to be healthy, spend time with her husband and friends, play with her grandchildren and engage in activities she enjoys, which is something she tries to do in abundance.
