According to Dr. Lawrence Fisher, research director at the Behavioral Diabetes Institute (BDI), Diabetes Distress or “DD” refers to all the fears and worries that people with diabetes experience on a daily basis. Fear of complications or the fear of hypoglycemia are examples of the types of concerns that may cause DD.
I interviewed Dr. Fisher last month to discuss DD and who was at risk for it. He was adamant that I understand how Diabetes Distress is a very normal part of living with diabetes affecting not only people who have the disease but also family members, especially parents and partners. Additionally, DD is not a complication of diabetes but the emotional side of diabetes. If injecting insulin is a physical component, then fearing for your life because of hypoglycemia is an emotional part of the disease. The question isn’t: who is at risk for DD, but when during an individual’s journey with diabetes, are the risks higher? There are common periods when people have the greatest probability of feeling elevated levels of distress about their life with diabetes. They are:
- Around the time of diagnosis and at the time of learning how to self-manage diabetes
- At the emergence of a complication
- Adding to or switching a medication
- Switching healthcare plans
- Switching healthcare providers (finding a new doctor)
Dr. Fisher, and Dr. William Polonsky, president of BDI, developed the Diabetes Distress Scales for people with type 1 diabetes (T1D) and type 2 diabetes (T2D) as well as scales for parents of children with type 1 diabetes and partners of people who live with diabetes. Depending on a person’s type of diabetes or connection to the care of a person, each scale was developed for healthcare professionals to use as a tool to generate discussions with their patients about the emotional side of diabetes, which is usually not given a good deal of attention.
Predictors of DD among T2D adults
Three groups of variables were identified as potential predictors of becoming high DD.
- General patient characteristics (patient age, sex, education, time since diagnosis and self-identified ethnicity). Life context stresses have been shown to affect blood glucose levels and self-care behavior thus potentially generalizing to affect the emergence of high DD over time.
- Second, patient biological variables ( HbA1c, BMI, number of co-morbidities, number of diabetes complications, diastolic and systolic blood pressure and non HDL cholesterol).
- Third, patient behavioral variables included the diet and exercise components of the Summary of Diabetes Self-Care Activities
The seven major sources of DD among adults (BDI)
Feeling that one’s blood sugar numbers have a life of their own; e.g., “feeling that no matter how hard I try with my diabetes, it will never be good enough.”
2. Negative Social Perceptions
Concerns about the possible negative judgments of others; e.g., “I have to hide my diabetes from other people.”
3. Physician Distress
Disappointment with current health care professionals; e.g., “feeling that I don’t get help I really need from my diabetes doctor.”
4. Friend/Family Distress
There is too much or too little attention paid to diabetes amongst loved one; e.g., “my family and friends make a bigger deal out of diabetes than they should.”
5. Hypoglycemia Distress
Concerns about severe hypoglycemic events; e.g., “I can’t ever be safe from the possibility of a serious hypoglycemic event.”
6. Management Distress
Disappointment with one’s own self-care efforts; e.g., “I don’t give my diabetes as much attention as I probably should.”
7. Eating Distress
Concerns that one’s eating is out of control; e.g., “thoughts about food and eating control my life.”
Elizabeth Snouffer is editor of IDF’s Diabetes Voice. To see the original interview with Dr. Fisher, visit HERE.
To access the Diabetes Distress Scales and visit the Behavioral Diabetes Institute (BDI), click HERE.