Diabetes can be a messy dance partner. It doesn’t always do what you expect. Even after over 40 years of experience with diabetes, I still sometimes feel confused, frustrated, or even afraid to do things I want to do. But for all those challenges, living with diabetes has taught me something else: how to strengthen my resilience like it was a muscle.
The good news is, people with diabetes are especially equipped to build resilience. We have this advantage that most other people don’t.
What is resilience? In short, it’s the ability to cope and adapt well when dealing with adversity or significant sources of stress or hardship. More on that later.
In my experience, diabetes is notorious for two things: tripping me up when I think I have things figured out and kicking me in the teeth when I’m down. But no matter how many times I fall, I find a way to dust myself off and get back to it. I consider resilience an important part of my diabetes toolkit, and I think it can be a valuable part of yours as well.
Like many of us, I bet you have already demonstrated a lot of resilience around diabetes in many ways. For starters, getting through a diabetes diagnosis is an intense, emotional process. Yet, you took in as much information as you could, identified critical next steps, and figured out how to keep going—a perfect example of resilience.
And each day with diabetes brings new opportunities to practice. Have you ever gone to your doctor expecting a lower A1C result than what came back? Did you experience emotional distress? What happened next? Did you start to problem solve and investigate? That’s another good example of resilience. See, you are further along than you think.
What’s most interesting to me about resilience is that there is always room to strengthen the skill.
What exactly is resilience?
Cornell Health defines resilience as “your ability to positively cope with stress and adversity.” The article describes “using the experience of adversity to enhance flexibility and overall functioning.” The APA article reinforces that idea: “Becoming more resilient not only helps you get through difficult circumstances, it also empowers you to grow and even improve your life along the way.”
Specific to diabetes, Dr. Marisa Hilliard, a diabetes psychologist from the Resilience and Diabetes (RAD) Behavioral Research Lab at Baylor College of Medicine, and her team defined “diabetes resilience” for one of their studies as the achievement of optimal diabetes outcomes despite the challenges of living with and managing diabetes. Those optimal (or “resilient”) outcomes include having a good quality of life and engaging in positive diabetes self-management behaviors, along with desired health outcomes (meeting glycemic targets and reducing complications and hospitalizations). I like that definition because it includes all of the diabetes details we usually worry about.
I had a lot of opportunities to practice resilience during the second half of 2019 while training for a long bike ride. This wasn’t just any bike ride. This was JDRF’s annual ride to cure diabetes, and my friend Erik Douds convinced me to join him for a century ride through Death Valley, Calif. That’s 100 miles of cycling through the famous desert. The thing was, I hadn’t been on my bike in years, I hadn’t done a ride that long in even longer, and I’d never set foot in any desert. What could go wrong?
I tuned up my bike and started training early. I knew it would be hard, and it was. There were many times that my diabetes didn’t cooperate while I was out riding and I had to stop. Sometimes I stopped because low blood sugars sapped my strength. Other times, highs were to blame for rides that I couldn’t slog through. At first, I was angry. I worried that the disruptions in my training program would cause me to fail when the big day arrived. But then I stepped back and recognized that these disruptions were also part of the process. Part of training with diabetes was to figure out what works and what doesn’t, so I would be more knowledgeable during the actual event. In other words, I would be more resilient.
The big day arrived, and I leaned hard on the resilience skills I built over the past few months. I knew that even though I wanted to quit, I could find ways to manage my blood sugar and my exhaustion to push through. Now, I can say I rode my bike 103.3 miles through Death Valley.
Resilience is said to be like a muscle, and that with practice and intention, anyone can develop it. But the APA warns, “The road to resilience is likely to involve considerable emotional distress.”
That was certainly true for me when training for my bike ride. There have been plenty of other times where diabetes has brought me down an emotionally stressful road, and I’m sure there will be plenty more. Dr. Hilliard says this is an important part of the process. “You can’t learn to be resilient if you don’t face any challenges.” She adds, “If you achieved all kinds of good outcomes, but never had any hard times or difficulties along the way, that isn’t resilience, it is just incredibly lucky!”
I love that point. I can’t count on luck. But learning to be more resilient is in my control, and I like that feeling.
For those of us with diabetes, diabetes distress may be synonymous with emotional distress. Another moment that stands out for me was when I experienced a severe low blood sugar after playing basketball one afternoon. For years, the routine was to play ball for a couple of hours with the guys at the YMCA, then enjoy lunch together at a nearby restaurant. We’d done it hundreds of times. But this time, something went wrong.
I checked my blood sugar just after playing and was surprised by a high reading. I took a correction dose of insulin, adding a bit extra as a pre-bolus for lunch. After a quick shower and drive across the street, my grilled cheese and fries arrived almost instantly after ordering. As I took the first couple of bites, my stomach revolted, and I thought I was going to throw up. I made a quick bee-line toward the bathroom but started stumbling as I approached. I just needed fresh air, I told myself. The front door was just a few more steps ahead. I crashed through the door, leaned my back against one of the brick walls and slid down as I peed in my pants and passed out.
I couldn’t have been out long. I remember my basketball friends bursting through the front door after me. They must have seen something was wrong. They knew about my diabetes and how to treat low blood sugars because of years of us playing basketball together. They’d seen me treat lows at the gym, and I’d even talked to a few of them about what to do in a situation like this. Thank goodness for that. I drank some orange juice they brought out and watched the ambulance pull up. I sat there in a puddle of my own urine answering more questions, eating some of my sandwich, and letting the EMTs check my blood sugar a few times until it came back up.
One of my friends gave me a ride home, and I rested with my family for the rest of the day. We were all pretty shook up. What if I had been alone? What if I had been driving? Things could have gone so much worse. That experience rattled my confidence for a long time before I could exercise without fear of severe lows again. That was also developing a kind of resilience.
Because of scary situations like that afternoon, I try to take a more cautious and balanced approach to improving my time in range. Even though that scary low happened almost a decade ago, I still think about it often. I am less aggressive when it comes to therapy adjustments that might cause lows or push my average blood sugar too far down, and I’m comfortable with a slightly higher average blood sugar as long as I’m meeting the goals I set with my doctor.
I have also learned that diabetes brings many micro-distresses – things that are bothersome but seem minor or happen frequently. Such as, when I think I’ve done everything correctly yet still end up with high or low blood sugar. Or, when I’ve been interrupted at an inconvenient time by low blood sugar. Or, when a pharmacy pickup or prescription refill has gone wrong. All these are micro-distresses, and they add up and tire us out. Our lives are so full of these that I feel the temptation to regularly compartmentalize and shove them into the background.
Dr. Hilliard notes how different these micro-distresses can feel from major events like my severe low after basketball, and she points out that different situations call for different responses and strategies in order to be resilient. For me, with many of the micro-distresses, simply acknowledging the disruption and giving myself the emotional space to be frustrated is helpful. This is one of the ways I’ve learned to fight diabetes fatigue.
When it comes to traveling the road to resilience, one that the APA says “likely involves considerable emotional distress,” having diabetes means you probably already have lots of practice. That is how we are especially equipped to build resilience. That is our advantage! But recognizing diabetes distress is just part of the puzzle. Figuring out what to do, especially if you don’t feel resilient, is what comes next.
Action steps – how to build your resilience muscles
Some of the steps I’ve learned to build resilience are surprisingly simple, which is good news.
- Build a strong foundation with the basics of self-awareness and self-care. Both Cornell Health and the APA emphasize the importance of this. For self-awareness, work to understand more about your strengths, weaknesses, tendencies, and motivations. For self-care, eat well (check out Catherine Newman’s recipes for inspiration), stay hydrated, get enough sleep, and stay active. These are fundamental healthy habits that support your overall physical and emotional wellbeing.
- Watch out for common thinking traps – another point the APA recommends. One thinking trap is overgeneralizing. For example, if you make a mistake estimating carb counts, do you tell yourself you’re terrible at counting carbs? Recognize that carb counting is difficult for a lot of people with diabetes and don’t overgeneralize; just because you had trouble once or twice doesn’t mean you are bad at it. Catastrophic thinking is another trap. Does a negative event or a short bad spell send you down a spiral of catastrophic thinking? Do you throw your hands up and tell yourself you’re bound to fail?
If you find yourself caught in these thinking traps or the many others that exist, it’s helpful to try to change your perspective. If a friend were in your situation, would you have more compassion and a more realistic view of the situation? How would things be different if you treated yourself with the same kindness and realistic view?
- Know your strengths and use them. Dr. Hilliard encourages you to think about what you are GOOD at and what you LIKE doing; these are your strengths. Then, think creatively about how to apply those strengths to diabetes-related challenges. There are some examples spelled out in more detail in this resource she created together with JDRF.
- Stay connected and avoid social isolation. It’s easy to pull back and tuck away, especially when you feel down or are dealing with something difficult. It’s essential to take the time and space you need. But don’t stay there forever.
Dr. Hilliard points out that cultivating social connections and empathetic and understanding relationships helps build resilience. In a recent study, Dr. Hilliard’s team found that social support from family, friends, healthcare professionals, and community members – including others with diabetes – was a central part of how young adults with type 1 diabetes defined “diabetes resilience.” They talked about the importance of different types of support, including both hands-on support (knowing how to handle a diabetes emergency, like my severe low after basketball) and emotional support (being there to listen, care, and ask questions) for living well with diabetes.
The diabetes online community is a big part of my resilience toolkit. I felt alone and confused about so many of my experiences with diabetes until I found and connected with others with similar stories. I found a sense of normalcy through shared experiences and also learned new perspectives to reflect on as I coped. Staying connected has been huge for me as I continue to build resilience.
In particular, I enjoy participating in the weekly #DSMA Twitter chat (here is a good resource from ADCES about how and why to participate), reading diabetes blogs (a few of my favorites are Renza at Diabetogenic, Mila at The Hangry Woman, and Molly at Hugging the Cactus), and watching funny YouTube videos (Levi at Between Two Lines often makes me laugh). There are so many great resources, but it can take some time to find ones you enjoy and relate to – you can use this resource from ADCES to get started.
- Get granular with your emotions.Do you tend to be overly optimistic for the sake of social media? When you’re excessively positive, especially about problems you’re facing, you hinder your ability to solve the issues you’re facing. Psychologist Susan David has a fascinating TED Talkand Armchair Expert podcast episode that talk about your emotions as adaptable and functional tools that help you figure out what to do – if you don’t get in your own way.
Another tendency people have when struggling is using huge labels, like “stressed” or “sad.” Dr. David describes these as very big umbrella labels and says that you need to go more in-depth. You need to face what you’re experiencing with compassion and find one or two more clear labels for what you’re feeling. The more labels and the more accurate they are, the better. Are you feeling depleted? Are you feeling tired? Are you feeling frustrated?
When you label your emotions more accurately, you can figure out why you feel that way. At that point, something very special happens: the readiness potential in your brain is activated, and your brain starts working to predict and plan concrete steps to solving the problem. “But not just any steps,” Dr. David describes in her TED talk, “the right steps for [you].”
Taking action on what’s bothering you is one of the best examples of building resilience.
- Ask for help if you are struggling. Dr. Hilliard says, “Asking for help from a professional is a great way to overcome challenges and be resilient!” Talk with your doctor if you need help finding a mental health professional to work with. There is also a searchable databasefrom the American Diabetes Association with more than 200 mental health professionals who are knowledgeable in diabetes.
So, what’s next?
Practice, repetition, and reflection.
Building resilience is a process for everybody, even for those who seem more resilient than most. But with the knowledge that resilience is possible for everyone along with a handful of ideas and resources to get you started, I hope you feel better equipped for your journey. You’re already well on your way.
This article originally appeared on diaTribe Learn. Written by Scott Johnson.
Scott has lived well with diabetes for more than 40 years. He is an experienced diabetes advocate who has worked with a wide range of stakeholders across the healthcare environment to help them establish effective communication with the patient community. His expertise in the diabetes social media space is recognized worldwide.
Today Scott is the US Patient Success Manager for mySugr (all opinions expressed are his own and do not necessarily represent the position of his employer), and he continues to run his award-winning blog “Scott’s Diabetes” as time allows.
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