Fighting Diabetes Fatigue with Gems from the Journey
By Scott Johnson
Living with diabetes is an ever-evolving journey, one that can often lead to feelings of weariness and exhaustion. Scott Johnson shares his own experiences with diabetes fatigue and how he has learned to find strength in his journey and cope when times are tough.
I’m approaching my 41st diaversary, or diabetes diagnosis anniversary. I’m doing well and have tried my best to take care of myself. But in my mid-twenties I began to wrestle with diabetes fatigue. Maybe you have, too? I’ve come to think of diabetes fatigue as a normal part of living with diabetes and I’d like to talk more about it. I want to share some of the things I’ve learned in the hopes that they’ll help you, too.
The day I wanted to give up
Even many years later, I remember it as clear as ever. I was in my late-20s and at home with my wife and our kids. My son was three and my daughter just a few months old. It was a beautiful Minnesota spring afternoon. The weather was warm but hadn’t turned humid and there were no mosquitos yet. It was a perfect day to spend outside with my family and there was nothing much to complain about. I had been dealing with my diabetes most of my life, wrestling with the normal difficulties as a kid and then navigating the tumultuous teenage years dealing with the condition, and by now, I thought I had it pretty well under control. Life for the first time in a long while felt manageable, like I could take a breath because I had won some control over my life.
But if that was true, why then did I snap? How had “diabetes fatigue,” that is, the exhausting, nonstop day-in and day-out challenges of managing the disease, gained the upper hand? And how could I restabilize myself?
That day I was collecting mail from the mailbox out front and I walked through the house sorting envelopes as I went. My wife was sitting in the backyard with our kids, so I walked out of the back door and down the short concrete steps, handing my wife her stack of mail as I approached. But she didn’t want the letters, and her refusal to take them made me suddenly, inexplicably angry. I made some snarky comment and stormed back inside with her mail as if it were the biggest inconvenience in the world. What a silly thing to get angry about. Of course she didn’t want her mail right then. Who would?
I came back outside a few minutes later and you can probably imagine the look she gave me – her eyes were full of fire, confusion, and concern. “What is going on with you?” she asked as I sat down. I didn’t know. All I knew was that I was exhausted. I felt mentally depleted, as if all the highs and lows of managing diabetes for a lifetime had caught up with me in one fell swoop. I never saw it coming, and it knocked me down. It scared me and it scared my wife. That was when I knew I needed help to deal with mental side of diabetes management.
But why then?
By that time, I’d been living with type 1 diabetes for more than two decades, ever since I was five. My wife and I bought our first house in North Minneapolis and were working hard to make ends meet. We soon had a young son to care for, and even though everything was going well, I started feeling new pressures of adulthood. What did it mean to be a good husband? What did it mean to support a household? What did it mean to be a father?
Managing diabetes already took time and energy, and within just a few years I had added a lot to my plate. Fatherhood presented unforeseen challenges. I was amazed at how much work and worry being a parent was. And, that was true even though my son didn’t have diabetes. My parents had done all of the work I was doing plus all of the diabetes care that I required as a child. I still have memories of graduating from pee strips to blood testing and matching colors by eye on the strip vial. Back then, they didn’t have the tools we do today. The appreciation I felt for my parents grew exponentially.
Fatherhood also cranked up the pressure I felt in my diabetes management. I realized I needed to be there for my son and his little sister, who joined the family one cold Minnesota January a few years later. With two kids to provide for, I constantly wondered if I was trying hard enough with my diabetes. What would my future look like? Would I pay a price because I hadn’t managed it well enough in years past? My emotions began to boil over when low blood sugars interrupted playing with my kids or disrupted family plans. All of a sudden, life felt more complicated than I knew how to navigate.
I wasn’t coping well but I didn’t realize it, and before I knew it, I was angry with my wife about not wanting her mail. That episode might have been small, but it was enough to convince me to make a change. I called my insurance provider and asked about mental health resources. It took time and perseverance find a good therapist but it was a crucial step in getting a handle on all the stress I was dealing with.
My therapist and I talked about diabetes fatigue and how my experience was not unusual for people living with a chronic condition like diabetes. I learned to use breathing exercises when I noticed myself getting worked up. I learned to talk more openly with my wife about my worries and concerns. I learned to ask for help more often, such as when lows interrupted play sessions.
While it was a struggle for me decades ago to find a good therapist, there are now more ways to find therapists that specialize in diabetes. There is the Mental Health Provider Directory from the American Diabetes Association, which is a great place to start. You can also ask your healthcare team if they have recommendations – they may regularly work with a therapist or mental health group. If you have insurance, check with your insurance provider to see if they have resources or can help find a therapist who knows diabetes. And recommendations from friends with diabetes can also be helpful.
Around the same time that I began working with a therapist, I also found my way to blogging and started writing at https://scottsdiabetes.com. Writing became a helpful coping mechanism, and over time, I started to connect with others living with diabetes. Through my blog, I found a sense of normalcy and encouragement that helped keep me going when I needed a boost.
These skills, and the many more I learned, continue to serve me every day. I have learned, and continue to realize, that living with diabetes is more than navigating ups and downs while trying to stay in range. It’s also about learning to manage the mental toll of its unrelenting nature. The fact that diabetes never stops can be overwhelming, but I have learned to pace myself and forgive myself when things don’t go perfectly. It’s helped me learn how to be a better partner, parent, and now, all these years later, a grandparent.
What is diabetes fatigue?
As I prepared to write this article, I knew I needed to talk with Dr. Bill Polonsky, President and Co-Founder of the Behavioral Diabetes Institute in San Diego, Calif. As a licensed clinical psychologist and certified diabetes care and education specialist, he is world-renowned for his research and thought leadership in mental and emotional health with diabetes.
“It should be acknowledged that managing diabetes well is work.” Dr. Polonsky told me, “Not just physical work, but mental and emotional as well. Managing diabetes is a challenging job with no pay, no time off, no vacation. And like any challenging job, over time, it can get old and create feelings of fatigue.”
Dr. Polonsky’s words resonated with me. The pressures of being a good husband, a father, and supporting my family create a lot of fatigue on their own. Add diabetes to the mix and the feelings of fatigue are amplified, plus some. It’s no wonder I was struggling.
Recognizing diabetes fatigue
I’ve learned to recognize my diabetes fatigue in one of two ways. I might be triggered by something that tips me over the edge, and I experience a burst of frustration that is out of proportion, like what happened with my wife and her mail. Or it can be a slow and stealthy creep where I begin to feel very blah about all things diabetes-related over time. Recognizing these signs of diabetes fatigue early is important, as I learned when talking to Dr. Polonsky.
Dr. Polonsky also described that extreme diabetes fatigue – fatigue that lasts for an extended time – can lead to diabetes burnout, which can lead to self-destructive behaviors, like not checking blood sugars or not taking medication appropriately. You can imagine the perils of that kind of behavior going on too long.
If I can learn my unique early signs of diabetes fatigue, I can make adjustments to minimize my risks for a dangerous downward spiral. For example, if there’s a lot going on at work, I need to give myself more grace with my diabetes management. If home life is especially busy, I might talk with my family about how they can help. Or maybe I need to do a quick reality check of my expectations. If I’m feeling tired and run down, I’ll try to get to bed earlier.
Ways to cope
Learning how to cope with diabetes fatigue is very personal. Try a few of these ideas and experiment to figure out what works best for you.
Realize your focus will naturally ebb and flow. Diabetes is not the only thing in your life. It is normal for your focus to shift depending on where you are in life and what other priorities you are balancing. However, know that if you neglect or ignore diabetes, it will prioritize itself to the top of your list. Find a healthy balance between the demands of diabetes and your other priorities. This balance is a moving target that shifts all the time.
Don’t do diabetes alone. Connect with others and learn from the shared experience of many. Take comfort in knowing so many others face similar struggles. Ask how others manage their own diabetes fatigue. Celebrate wins together, both big and small. Maybe even share your perspective and experiences for others to learn from; I know this especially helped me.
Have open and honest conversations with your care team. Has your healthcare professional ever suggested something that you knew wouldn’t fit your lifestyle, but you just nodded and smiled politely before ignoring the suggestion? Imagine if you could instead say, “I understand our goals. Here are the parts of that suggestion I can’t do. Do you have any ideas or alternatives that might help?”
Some other examples for conversations with your care team:
“I’m having trouble affording this medication. Are there alternatives? Or a different approach to prescribing that might help? Can we split a higher dose pill?”
“I’m supposed to do this (take a medicine, measure blood sugar or blood pressure) twice every day, but I’m having trouble remembering the second time. What can we do?”
“Here are things I worry about. Are they realistic? Are there things we can do to set my mind at ease? What would serve me better to focus on?” An example from my own experience was worry over heart health. After a discussion with my endocrinologist, we decided adding a cardiologist to my care team would help set my mind at ease.
Find a safe way to take a break. When I asked Dr. Polonsky about tips for coping with diabetes fatigue, he said, “Sometimes people may really need a break!” And there are ways to do it. Maybe it’s as simple as a nice, long nap. Perhaps you have a friend or partner who can “take over” your diabetes management for an afternoon or a weekend. Maybe they count all of your carbohydrates for you, or do your blood sugar checks and record keeping, or wake up at night to check your glucose levels. Whatever bits of diabetes work you feel comfortable sharing, ask your care-partner to do it for you. You can also talk openly with your care team, “I’m battling diabetes fatigue. Talk to me about smart ways I can safely lighten the load on myself without creating extra and unnecessary risk.”
Be kind and compassionate with yourself. If you are struggling with diabetes fatigue, please don’t beat yourself up. That is the last thing you need. More guilt, more shame, and more pressure will not help. Give yourself some room to feel what you need to feel. Sit with your feelings and, if you can, identify exactly what is bothering you. By getting more specific, you’ll find it may be easier to come up with some ideas that might help.
I’m still learning
It’s hard for me to believe, but my son is 21 now with a young daughter of his own. I’ve come a long way since that day with my wife and her mail 20 years ago, but I still battle diabetes fatigue from time to time. I think it’s a normal part of living with diabetes and I’m still learning effective strategies to deal with it.
If any of this hit home for you, I encourage you to talk more about it with your loved ones, try a few of the ideas in this article, and don’t hesitate to ask your healthcare team for help.
Scott has lived well with diabetes for more than 40 years. He is an experienced 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 he is the Patient Success Manager, US for mySugr (all opinions expressed are his own and do not necessarily represent the position of his employer) and continues to run his award-winning blog, Scott's Diabetes, as time allows.