When I ran for President-Elect in 2022, my “platform” was the emotional side of diabetes. I chose this topic because it needs better marketing in diabetes care and education.
People living with diabetes have the physical (visible) tasks of checking glucose; taking medications; wearing, managing, and maintaining devices; going to appointments; answering questions; measuring, calculating, and eating food; exercising; and so on. In addition, they have the emotional (invisible) tasks of thinking about every single thing they do and eat, dealing with stress, paying attention to the effect of everything on their glucose and the effect of glucose on everything, listening to and reading judgmental messages and figuring out how or whether to respond, worrying about complications, and so on.
There is much work being done on diabetes distress, which is the fear, stress, and anxiety that build up around the various aspects of managing a complex disease like diabetes. However, many diabetes professionals have never even heard of diabetes distress. We know that people who are experiencing diabetes distress tend to have higher A1C and lose focus on taking care of themselves, yet we don’t always ask people about it in the clinical setting.
Through the growing evidence base, we are learning how important it is to assess and address diabetes distress. While new drugs and technology are sweeping the nation (and shiny new things are so much fun for us DCESs!), it’s this timeless and persistent problem that is more likely to get neglected. I admit, there are many challenges in our work. We can’t help people with diabetes who don’t have access to care, and people with diabetes can’t effectively manage the disease without appropriate medications and equipment, so these are priorities. And they can’t effectively live with diabetes if they are drowning in frustration, stress, and worry.
Another challenge for DCESs is not having access to mental health professionals, especially those with expertise in diabetes. We have to get comfortable, therefore, with asking people if they are experiencing distress and helping them cope with it. Larry Fisher, PhD, a diabetes psychologist in San Francisco, suggests the following tips:
Think of diabetes distress not as “mental health” in the traditional sense, but as “the emotional side of diabetes,” something you know a lot about.
Asking people to share their “diabetes story” (how they feel about their diabetes; what worries, bothers, stresses them the most) and then listening carefully to them without judgement or a need to “fix or change it” is a major intervention in and of itself.
You cannot change how people “feel” about their diabetes, but you can help them understand how their feelings often negatively impact their management behavior.
A colleague of mine has this quote in her email signature: “Nobody can do everything, but everyone can do something” (attributed to Keith Ellison, Minnesota Attorney General). This statement is fitting for addressing the emotional side of diabetes, as DCESs. We can’t fix or take away the emotional impact of diabetes; however, we can shine light on it, acknowledge it, and give people an opportunity to talk about it.
Another important part of this is to take care of ourselves. Diabetes care and education can be incredibly rewarding, and there are times when it might feel thankless and draining. I hope you are able to take some time for yourself; participate in hobbies and activities you enjoy. Here are some of the ones on my list: candles, coloring, going for walks in nature (and looking up!), listening to or participating in music, spending time with my family and friends, good conversations, and humor.
Enjoy the beauty of this autumn season and be sure to sign up for ADCES’s Diabetes Technology Conference, which will be held December 13-14 in Chicago. Hope to see you there.
ADCES offers a handout on diabetes distress in both English and Spanish. Download them today.