Diabetes Distress: Why It’s Common and What We Can Do About It!

By Varun Iyengar and Adam Brown

Twitter Summary: Providers and caregivers can help PWD by providing a sense of hope, and more.

At the recent IDF World Diabetes Congress in Vancouver, behavioral diabetes guru Dr. Bill Polonsky gave a talk on diabetes distress, covering what this emotional state looks like, how and why it occurs, and simple strategies for addressing it. This reflects his research dedicated to one big question: how can we help people with diabetes feel motivated to succeed?

Dr. Polonsky stressed that providers often communicate the wrong message – rather than hope, patients hear negatives and feel fear. The reason for vigilant management is not to live a long and healthy life, but to avoid complications. That framing makes a difference, as people with diabetes often go on to develop distress: an attitude of feeling defeated by diabetes.

We share Dr. Polonsky’s belief that all patients want to live healthy lives. The hard question, however, is how patients, providers, and caregivers should reframe conversations about diabetes. Here’s what Dr. Polonsky said:

Dr. Polonsky shared what “diabetes distress” sounds like in practice: 

• “Diabetes is taking up too much of my mental and physical energy every day”

• “I am often failing with my diabetes regimen.”

• “Friends or family are not supportive enough of my self-care efforts.”

• “Diabetes controls my life.”

• “I will end up with serious long-term complications no matter what I do.”

How common is diabetes distress? (You are not alone!)

The rate of diabetes distress is far greater than is often appreciated; 39% of type 1 and 35% of type 2 patients experience significant levels of diabetes distress at any given time. This distress cannot be treated with depression medications because…it is not depression! Rather, it requires a greater focus on acknowledging and addressing the emotional and behavioral obstacles associated with diabetes.

What can we do about diabetes distress?

Dr. Polonsky stressed the need to adapt the messages people with diabetes hear from providers and caregivers, moving away from “blame and shame” to a new message:

“Well-controlled diabetes is the leading cause of nothing!” 

Indeed, people who have good diabetes care over time have very low rates of complications. In one large study, after 30 years living with type 1 diabetes, only ~1% had developed severe vision loss and amputations. While genetics and other health factors like blood pressure play a role in complications too, keeping blood sugars under control can dramatically reduce the risk of diabetes eye, kidney, and nerve disease (retinopathy, nephropathy, and neuropathy). As Dr. Polosnky told us, "The 'leading cause of nothing' doesn't mean 'nothing bad can happen'...[but] with good care, odds are good that you can live a long and healthy life with diabetes."

According to Dr. Polonsky, providers and caregivers can help by:

• Providing a sense of hope;

• Helping people to see that their own actions can make a positive difference (“Let’s try out a blood glucose monitoring experiment at home so that you can see how choosing healthier foods at mealtime and moving more often can improve blood sugars);

• Promoting reasonable expectations (“Lose five pounds instead of 50 pounds”); and,

• Making diabetes less overwhelming by constructing a step-by-step plan for action.

Some of our favorite quotes from this talk:

•  “When you are diagnosed, it feels like the universe has just handed you a new job with no pay and no vacations. If you are going to manage it, it takes effort and vigilance. That’s why it’s this balancing act.”

• “You have to show people that their own actions can make a positive difference. When you do so, this can help to change things so that patients no longer feel that they HAVE to manage their diabetes but that now they WANT to do so.”

• “There is so much blame and shame about diabetes. If we look at the A1c in age groups from the T1D Exchange, which age group has an average below 7.0%? Hmm … let’s see. None of them! We just want people to chill out. If you’re having a tough time, rest assured that a lot of other people are too.”

For more about how you can work to reframe your own experience with diabetes, read this piece on asking the right questions.