Panel of CEOs Discusses the Hidden Burden of Diabetes: the Mental Load

What’s most impressive about this group is not only their leadership roles within some of the most respected organizations in the diabetes industry but also the fact that they are handling the demands of such positions while each manages a form of diabetes, which raises the question: how do they do it?

The everyday demands of all types of diabetes can feel pressure-filled for the average person who is not in such a high position of authority, much less one with hundreds or thousands of employees to answer to, communities to connect with, meetings to host, and advocacy movements to guide.

This panel discussion recap highlights not only this impressive feat but also the panel’s advice for community members on managing the day-to-day stresses of an unforgiving disease like diabetes. Each panelist brings decades of personal and professional experience.

The Burden of Diabetes is Heavy for All, Even CEOs

The demands of jobs like theirs come with busy schedules, extensive travel, speaking obligations, and leadership responsibilities. 

When it comes down to it, however, they are all dealing with the same things we are—navigating the pillars of health while managing a disease that never lets up and demands constant attention. It’s not just about managing diabetes—it’s about managing it on top of work, family, friends, household obligations, personal nutrition, exercise, and more.

“I can’t believe how hard this still is 50 years later,” Braun said. “There’s a constant vibrating hum going on in my head. It’s not something we can check on once or twice a day. It’s the first thing I look at in the morning after I meditate, the first thing I think of.”

Diabetes is always on your mind. Braun said she has to consider it carefully around exercise, when she’s about to start a meeting, when she's about to get on a plane, or especially when she’s about to drive. A hiker and kayaker, she’s always doing quiet calculations in her head to make sure her diabetes is in good enough of a place so she can enjoy her life’s responsibilities, hobbies, and pleasures.

“No matter how much you think you know, you don’t really comprehend the constant hum,” Braun said.

“I’ll bet every single one of us checked our numbers before we hopped on this call,” Hernandez said.

 “And maybe every single one of us has something like your favorite glucose to treat because you don’t know if you’ll go low in the middle of this. It’s (diabetes) is there all the time.”

“To me, the metaphor is, say it’s summertime and you’re in the house, and your windows are open,” Syron said. “You don’t realize someone is mowing a lawnmower somewhere until it stops. And you’re like ‘oh that noise was bothering me’—it’s that constant hum that never goes away, as Beth said. The lawnmower doesn’t turn off. There’s never peace and quiet.”

For professionals like this panel, the line between professional and personal also carries a heavy load.

The Blurry Line Between Diabetes in a Professional Setting

“Sometimes, I’ll be talking to my marketing team about all the negative complications of diabetes, and you’ll feel like saying, ‘hey, that’s my future you’re talking about’—it’s not theoretical,” Syron noted. “That’s my life. It’s a blur between the professional and personal. I guess the load just feels heavier when that blurring is happening.”

Diabetes is 24/7, 365 days per year, no matter what position of influence you find yourself in.

“I’ve worked with a lot of great people over the years,” Kowalski said. “One of them being Katie DuSimone, who we unfortunately lost to cancer. She always used to say ‘we measure glucose,’ but she wished there was a measurement for mind space that’s occupied by diabetes.”

The diabetes mind noise is always rumbling, the panel concluded. Diabetes is an abnormal experience to navigate. It’s not normal for anyone to have to deal with it. This disease asks us to try to find normalcy in a body that can’t function as it should.

The most exhausting part of diabetes is usually not visible to others, but it feels loud for those who live with it.

Diabetes Technology Is Improving, But Burdens Are Still Rising

While progress has been made on the automated insulin delivery (AID) and continuous glucose monitoring (CGM) fronts, there is still a way to go as organizations and researchers work closer toward finding a cure and improving the way people with diabetes (PWD) live.

But with these improvements comes the flip side of the coin. Diabetic technology can also:

• Increase awareness of every blood sugar fluctuation or irregularity
• Create alarm fatigue
• Interrupt sleep
• Constantly remind users they have diabetes

And that mental burden isn’t often discussed because gratitude often comes first, but both can be true. Better blood sugar management doesn’t always mean a lessened emotional burden.

“I struggle with sleep at times,” Hernandez said. “Part of it has to do with the alarms. Sometimes, this is the feedback I give device companies. When it does wake me up at night, it becomes a disruption. Then I have a hard time falling back asleep. The lawnmower goes off, right?”

“The mental load can really hit me if I’m feeling ill with something else,” Syron said. “Or when I go to the healthcare provider and all they want to talk about is my diabetes. The chair of my board, who, when I first started here, was an endocrinologist, often said his patients would say, ‘I could walk into an emergency room with an arrow through my head,’ and they’d still ask them about their diabetes.”

Diabetes affects so many things in life, but it is not everything. It is not every part of your identity or the whole picture of your life. You are so much more than your diagnosis.

“Why does it always have to come back to diabetes?” Syron said. 

Life Experience Doesn’t Exclude You From Diabetes Problems

Technology can make you think about diabetes more than you want to. You might even notice some anxious or obsessive patterns as a result of using it, even though it can be tremendously helpful for so many in improving diabetes management.

There’s a trade-off that’s not discussed much.

The reality is, there’s no level of diabetes where it becomes easy. It’s difficult, no matter how long you’ve had it.

Braun said she experienced severe lows before a major diabetes conference, while Kowalski said he ran out of insulin overnight before speaking to a group of physicians.

Forgetting supplies despite decades of experience is real because PWD are human. No matter how many years of experience with diabetes you have under your belt, unexpected blood sugar swings can still happen, too. The only thing in life we can expect is the unexpected, even with diabetes.

“There is no diabetes ‘PhD’ where you graduate and stop struggling,” Hernandez said. 

Experience certainly helps, but diabetes can still be unpredictable even though we’ve come so far in so many ways. Perfection with diabetes is simply impossible. 

You can:

• Count carbs
• Take insulin appropriately
• Exercise regularly
• Follow all recommendations

And still have blood sugar levels that don’t play nice. The panel agreed that self-compassion, flexibility, and letting go of perfectionism are critical for a well-lived life with diabetes.

Stigma Supports No One With Any Type of Diabetes

Stigma, of course, doesn’t help the mental load of diabetes feel less heavy. Syron said when she was initially diagnosed with type 2 diabetes (T2D), she felt a lot of shame. She blamed herself, hid her diagnosis, told almost no one, and even delayed taking action because she felt embarrassed about her diagnosis.

There are harmful misconceptions, the panel noted:

• People cause their diabetes
• T2D is the result of lifestyle choices
• Certain people deserve diabetes

None of which is true. Kowalski emphasized that stigma harms everyone living with any form of diabetes—shame and misinformation create barriers to care, support, and self-management.

“There’s a place for a lot of us who start in places of misdiagnosis to be bridges between people with all types,” Hernandez said. “I’m going to be an ambassador for all of us. I think it’s up to those of us who have the courage and information to start educating and changing the conversation.”

“It doesn’t matter what type of diabetes you have,” Syron said. “Stigma affects all of us. Stigmas might be different, but none of us should face the stigma. It’s a contributor to negative physical health outcomes (as well as mental).”

“The stigma I hear the most is ‘Should you be eating that?’” Braun said. “I get snarky when I hear that.”

Still, it shouldn’t take the pain of a misdiagnosis or being the receiver of such stigma to bridge the gap. Active listening and open-mindedness are valuable starting points that most people can build on. The language we use to talk about ourselves and others matters, as does addressing and not standing for tired stigmas and misconceptions. 

The panel suggested using the following terms to support a healthy mind with diabetes:

• Instead of “test” blood sugar, say “check”—it’s not a test, you’re just checking.
• Instead of “good” or “bad” numbers, say “high” or “low”—numbers aren’t “good” or “bad,” they’re information.
• And never judge anyone based on their A1C values—this is just one number at a point in time. There is more life ahead of you. Your A1C is not your worth.

Conversations around diabetes management should be curiosity-driven, supportive, and focused on problem-solving to truly support PWD. Language has the power to increase or reduce diabetes distress. That’s evident across these conversations.

Despite the abundance of community groups, social media content creators, evidence-based publications, and resources, healthcare providers (HCPs) may still overlook the emotional side of diabetes.

It may be hard to grasp or foreign to approach it this way, even in the healthcare setting, if you don’t live with it yourself. But standards need to change because PWD deserve better.

“The mental load goes beyond stigma,” Syron said.

Healthcare Systems Can Be More Supportive for People with Diabetes

Healthcare is often focused solely on numbers, but diabetes care encompasses so much more. Syron said that her current physician always starts the appointment by asking, “How are you feeling about your diabetes?” 

Simple questions like this can set the tone for the rest of the appointment and create ease where it might otherwise be lacking. By reducing anxiety and distress across these aspects of health, the panel noted that individual diabetes outcomes can improve. 

Support and shared understanding can provide PWD with the validation, support, and relief they need to move forward and thrive with diabetes. Connection, such as through this conference, online or in-person groups, can certainly help reduce the mental load.

Workplaces can also strive to be more inclusive by offering better benefits coverage, reducing stigma around disclosure, improving understanding of diabetes devices and alarms, and providing safe storage for insulin throughout the day.

The Hidden Burden of Diabetes Is Loud and Clear to People Living With It

There are many, many ways to support PWD, all of which contribute to healthier, happier minds for those with any type.

Diabetes is not just a condition managed through insulin, medication, food, and technology. It’s also managed through emotional resilience, self-compassion, supportive relationships, and the daily effort of carrying a burden most people never see.

Or, as the panel summarized: “The part of diabetes that nobody sees is the mental load.”

Still, it’s nice to think about this group of influential people who understand mental load well and can potentially help so many others because of their situations. Where there is visibility, action can follow. 

“The job energizes me,” Kowalski said.

“I not only can bring my professional skills to the job, but I can also add the voice of someone living with it,” Syron said. “It adds extra power to it. I feel privileged to be in those rooms. It’s a privilege to represent.”

Lived experience matters—it can move mountains.