What is Diabetes Distress?
We had been invited to a small gathering in Hanoi for dinner. My husband, daughter and I had flown in on an early evening flight and the airport taxi rushed to get us there in time through a maze of unfinished highways thick with motorbikes and dust. I was exhausted.
Later, after the dinner plates had been removed, and conversations continued in other areas of the house, I had gone to the kitchen in search of something to drink, like juice. I don’t remember the rest.
I woke up out of a daze, sitting on the floor saturated in sticky water with a large bump on my head. Even my underwear was soaked. The entire dinner party was standing around me and was elated when I opened my eyes. Elizabeth, are you OK? What had happened? I looked around the room.
My husband was on the phone.
Andy, Elizabeth passed out and seized at a friend’s house – oh yeah, sorry, we’re in Vietnam. Anyway, we concocted a ton of sugar water and poured it down her throat—pretty much had to force her to drink it. She’s OK now. There aren’t ambulances here and the hospitals aren’t recommended. What should we do next?
Andy is my doctor in California and he did help out from afar, calling on me and checking to ensure I was okay until I made it home. I was fine in the end, but it had been a very frightening and unfortunate situation. It was the first severe hypoglycemic episode I had experienced in my nearly 40 years of living with type 1 diabetes. There was a lot of head slapping and should haves—why weren’t we carrying glucagon? Why didn’t the continuous glucose monitor (CGM) alert? Why didn’t I call for help? My husband was visibly distraught, and our 13-year-old daughter had been the one to find me unconscious. She squeezed my hand as hard as she could all the way back to the Hanoi hotel. This very scary and unpredictable event had created a good deal of diabetes distress.
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.”
The Diabetes Distress Scales give a language to emotions that are often hard to articulate. I can relate to all seven sources of type 1 diabetes distress, but I was aware that powerlessness had affected all of the family after Hanoi.
I haven’t had a severe hypoglycemic episode since that one in 2013. Hanoi was not my last experience with diabetes distress, and certainly there will be more to deal with in the future. However, today I am both better equipped and prepared to manage distress. Talking openly about my fears and listening to my families’ concerns are always a priority when they surface. Having a healthcare team that acknowledges the emotional struggles associated with diabetes and their willingness to assist and offer sound advice has been invaluable.
To access the Diabetes Distress Scales and visit the Behavioral Diabetes Institute (BDI), click HERE.