Managing a chronic condition like type 1 diabetes requires relentless vigilance and care — counting carbs, checking blood sugars, changing sites, planning outings. With the constant focus on blood sugar levels, sometimes people with diabetes (or their parents) forget another kind of high and low they may experience: the emotional side. That same vigilance can exhaust not just the body, but the mind and the spirit, and it can be all too easy to neglect the emotional well being of people with diabetes and the people who love them.
At this year’s Bay Area Diabetes Summit, Carb DM was lucky to have Dr. Michael Harris deliver one of the opening keynote speeches on emotional health. Dr. Harris, a pediatric psychologist by training, is the Director of Psychology in the Child Development and Rehabilitation Center at Oregon Health & Sciences University. He works with young people with medical complexities, and for 30 years his focus has been on type 1 diabetes in teenagers.
Dr. Harris’s talk was entitled Dealing with the “real” highs and lows for youth with diabetes. He gave the audience Five Big Ideas to help in dealing and coping with the emotional highs and lows of diabetes: mobilizing social support, focusing on behavior instead of outcomes, being mindful of language, giving in to emotional decision making from time to time, and celebrating success. Although Dr. Harris works with teenagers, his concepts and tips apply equally well to kids, teenagers, and adults, with diabetes, as well as parents of kids with diabetes. Here are Dr. Harris’ Five Big Ideas:
1) Mobilize Social Support
Good family, friends, and classmates can save more lives than seatbelts, broccoli, and colonoscopies combined.
Research has shown that the most robust factor relating to morbidity and mortality in any health condition is social support. The level of social support that a person has is one of the number one predictors of progression of disease! Here are a few ideas to help form a solid support network:
Support isn’t about numbers, it’s quality. You don’t have to have a lot of people supporting you — one good support person can be enough. And you have to be able to mobilize that support.
Don’t be afraid to ask for help! Men tend to get their support from their partners, while women tend to get their support from female friends. Single men are at especially high risk.
People with diabetes: Avoid the Grievance Story. Try not to fatigue your social support by personalizing your grievances and telling your story to the same person again and again and again and again.
Helpers for people with diabetes: Avoid Miscarried Helping. Sometimes you (the helper) may have tied the amount of time or effort they put into “helping” to the outcome. You continue helping and helping.. but giving them more of what they don’t need. What starts out as good intentions becomes a source of conflict. They may begin to see you as not being helpful or understanding, and you may think they don’t want help or don’t care. The solution: listen.
2) Behavior is the Goal
Behavior is the most important drug in healthcare and in diabetes. We don’t have control over blood sugars or A1C values, but we do have control over behavior.
Outcome is not always tied to behavior, so parents should reinforce behaviors, not outcomes. Here are some examples of situations where people tend to focus on outcomes instead of behavior:
Exercise + diet = weight loss?. Over the long term, this equation may be true, but in the short term, it’s not as simple as a 1:1 relationship. People who exercise may actually gain weight. Instead of focusing on numbers on the scale, focus on eating right and exercising.
Low fat diet + exercise = low cholesterol? Cholesterol tends to be heavily genetic, so people with parents disposed towards a high cholesterol may not see the same improvements in cholesterol levels as people with a family history of low cholesterol. Instead of focusing on cholesterol numbers, focus on eating right, exercising, and following your doctor’s instructions regarding medication and lifestyle.
Taking insulin = normal blood sugars? It’s not a 1:1 connection! One of the most difficult challenges for a parent of a child with diabetes is understanding and accepting that there may be a lot of fluctuations in blood sugars no matter how hard you work at it. Therefore, instead of focusing on blood sugars or A1C levels, reinforce the Big Three: insulin administration, blood sugar checking, and carb counting. Those are things that kids do have control over.
3) Talk the Talk
Language is powerful and drives a lot of what we think and feel.
How you talk to people about their health, and about diabetes, matters. Here are some examples of negative language and alternatives to use:
Bad Blood Sugars: The only bad blood sugar is the one that wasn’t taken. Parents tend to get excited and celebrate when their child’s blood sugar is in range, but that only reinforces the idea that having out-of-range blood sugars means failure. Blood sugar is just information.
Sneaking and Cheating: Kids are eating, they are not sneaking or cheating. When parents use those words, it implies an effort to conceal and consume food without parents’ knowledge or permission. It breeds distrust — and kids are always going to be better at hiding food than parents are at finding out! Parents can say that kids are eating too much of something, or not eating the kinds of foods their parents want them to, but they are still eating.
Not caring about their diabetes. Just showing up to clinic means they care! Look at it from a different perspective: if kids aren’t attending to their diabetes, it’s because they are out being kids. Kids are kids, and diabetes isn’t what kids do.
Diabetic. Say “person with diabetes”. People with diabetes are more than just a broken pancreas, they are people and students and athletes and writers and so many other things, who have diabetes.
Testing. Use “checking” instead. Testing blood sugars implies that the person can pass or fail.
Control. Use “management” instead.
4) Feed the Elephant
No matter how smart or rational you think you are, most of the decisions in the world are driven by our emotional brains. The emotional brain is powerful, and if you don’t take care of it, it will crush you.
When making decisions, people use a combination of their emotional brains (the “elephant”) and their rational brains (“the rider”). The rider is analytical, processes information. The elephant is the emotional driver, gets things done. Riders delay gratification while elephants go for the quick payoff. Both the elephant and rider must work together.
People with diabetes are constantly engaging the rational brain around food, activity, medication, etc… They try to analyze things all day, so the rational brain becomes fatigued. When the rider becomes fatigued, the elephant kicks in and makes the decision. When kids don’t do what parents want them to do, parents must consider that their kids’ elephants have taken over in making decisions about what to eat and what to do.
The moral of the story? You can’t be a rational thinker all the time. Sometimes you have to let the elephant brain do its work. This is why starvation diets don’t work, and people end up binge eating. Feed the elephant and give the rider a break.
5) Celebrate Successes
Diabetes can be punishing. Reinforce anything you can, and celebrate small wins.
Here are a few ideas to help you and your family celebrate each small win:
Punishment doesn’t work. When you punish someone with diabetes, you’re just adding insult to injury, because the person with diabetes already feels punished for having diabetes.
Cut your kids some slack. Remember, there are no natural cues or incentives for diabetes management. When you are sick, you want to take medicine because you know you’ll feel better. But people with diabetes don’t feel any better after checking blood sugars or taking insulin. So it’s super easy to forget.
Plan a vacation from diabetes. This concept might make parents nervous… but it doesn’t mean you stop taking care of your health. It just means to stop putting high levels of pressure on yourself to be optimally adherent. It means backing off a little bit for a set period of time. Having a set period of time is important — planning means that you have to set a start and end date!
Work with people at their “base camp”. Establish where a person is with their diabetes care (their base camp) before defining what a “win” (reaching the peak of Everest) means for them. See how they are doing and celebrate small wins from where they are currently, as opposed to looking too far forward. Otherwise, you might be setting them up for a climb they can’t make.
80% of success is showing up. Just showing up to clinic can be a win. It shows that the person knows he or she needs help, wants help, and wants things to be better. Thank them for showing up instead of punishing them for the challenges they face with their health.
Want to learn more about emotional health in teens with diabetes from Dr. Harris? Watch his full presentation at the Bay Area Diabetes Summit 2015, and check out his book, Teens with Diabetes: A Clinician’s Guide, co-authored with Korey Hood and Jill Weissberg-Benchell. Thank you Dr. Harris for giving such an informational and inspirational talk!