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)
Back in 2013, after the severe hypo, I was faced with a good deal of distress and so were my husband and daughter. It took some time for me to regain confidence, and I suffered from anxiety. My husband was concerned for weeks about the possibility of another episode, which frequently happens in the severe category. I took our daughter to a counselor to address her worries and to give her room to express her feelings. Together we discussed a plan to prevent another severe hypo from happening again. It was clear that back then each one of us needed our voices to be heard. After that, it was helpful to develop ideas for prevention and take action.
Dr. Fisher, and Dr. William Polonsky, President of BDI, developed the Diabetes Distress Scales for people with Type 1 diabetes (T1DDS) and Type 2 diabetes (DDS) 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.
The 7 major sources of DD among T1D 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. Hypoglycaemia Distress
Concerns about severe hypoglycaemic events; e.g., “I can’t ever be safe from the possibility of a serious hypoglycaemic 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.”
WRITTEN BY: Elizabeth Snouffer