“I felt as if I couldn't do it anymore. So I didn't,” explains Sarah Kaye, a mother of two, now 31 years old, who was diagnosed with type 1 diabetes as a preschooler.
Sarah is talking about burnout. Diabetes burnout. The phrase can mean so many different things to anyone who lives with any type of diabetes, and it can be triggered by any number of events or by nothing more than the daily physical and mental burden of living this disease.
“In my own practice,” explains William Polonsky, MD, founder of the Diabetes Behavioral Institute and author of Diabetes Burnout. “I have met far too many people who, because of diabetes burnout, have chosen to ignore their diabetes for years or, in some cases, decades. They are male and female, young and old, new to diabetes and veterans of the disease. They are not bad, stupid, or weak people. They are normal folks who are struggling with diabetes for understandable reasons. And their struggles take many shapes.”
While some feel helpless and defeated by the disease, explains Dr. Polonsky, others’ burnout may be the result of denial an "never truly accepting the reality of diabetes in their lives."
But all forms, no matter the severity or the duration, qualify as burnout.
For Sarah, burnout is something she has endured at least five or six times in the past 27 years of pricking her fingers, counting carbs, taking insulin and hoping it’s somewhat close to the amount her pancreas would’ve given her in an effort to avoid frustrating high blood sugars and exhausting low blood sugars.
“I think of burnout as the inability to take care of myself due to mental and physical exhaustion,” explains Sarah. “It's like a door has closed in my brain that is barring me from the place where all I know about diabetes care and diabetes management is stored. I can't enter because my body can no longer take the toll of swinging back and forth from happiness and elation to sadness,anger, guilt and frustration in a never-ending cycle. Like a clothes dryer, but in slow-motion."
Burnout is a personal experience—but is usually accompanied by a layer of shame and guilt. Others with diabetes may even become judgemental perceiving burnout as a weakness or giving up, but it's not that simple.
For some, burnout is an exhaustion. You somehow manage to keep your blood sugars in their usual ranges but you aren't as vigilant about checking them as you know you should be.
For others, burnout is an unbearable and overwhelming feeling of defeat, leaving you convinced that you can’t possibly keep up with the demands of the disease, whether you’re a type 1 or a type 2.
And for others, burnout is driven by the challenging combination of managing an intensely-demanding disease with other real-life stressors. Like any human being, you survive by coping. For some, coping is stepping back from diabetes management in order to devote energy to another part of your life.
“For me, diabetes burnout means I’ve grown tired of all that I have to do and think about in order to attempt to control my diabetes," says Kate Cornell, now 61-years-old, who has lived with type 2 since 2005. “It means I’m tired of talking about it, thinking about it and making the necessary sacrifices.”
Both Sarah and Kate will tell you they know exactly what led to their burnout. Kate's burnout is the result of intensely caring for her 97-year-old mother on top of her own recently-diagnosised fibromyalgia.
“I admit I haven't given much thought to my diabetes since November. I decided to eat what I want and deal with the blood sugars later. I still check them at least once per day, and mostly try to eat a lower carb diet, but I haven’t been giving any thought to anything long-range. That’s not a good thing for someone with diabetes.”
For Sarah, burnout came following a long stretch of doing her very best and achieving her goals. “My worst phase of burnout, by far, was after my first pregnancy,” she explains. “While trying to get pregnant, I knew I had to be on my game. I kept myself in the best control I could for a couple of years before finding out we had conceived.”
Burnout started to set in about the time she learned she was expecting—certainly not the time to take a break and recharge her diabetes management energy stores.
"So, that began the most nerve-wracking diabetes management time in my life. It wasn't just my health I was fearful about. I was constantly worried about harming my baby. Sadly, I never experienced the joy of pregnancy or the feeling of awe about the growing life that many woman have."
Sarah gave birth to a healthy baby boy—all her hard work paid-off—but she was exhausted, and the rollercoaster blood sugar levels that accompany diabetes management while adjusting to breastfeeding and life with a newborn took its toll.
For the next 9 months, Sarah tested her blood sugar sometimes only once a day, always seeing a high number that she’d only treat with insulin if it were above 300 mg/dL to prevent her body from reaching a state of DKA (diabetic-ketoacidosis). DKA is a dangerous state in which toxic levels of ketones are produced due to a severe lack of insulin.
While it’s important to acknowledge and get through your own burnout, it’s also crucial to do what’s necessary to keep yourself safe and out of the hospital. In addition to the emergent dangers of DKA and severely high blood sugar levels, long-term burnout that leads to long-term high blood sugars increases your risk for all of the many diabetes complications you’ve been warned about: neuropathy, retinopathy, nephropathy. Rather than inspire change, this list of warnings can unfortunately make the burnout burden even worse.
Dr. Polonsky recommends “diabetes vacations” to help curb or prevent burnout, but emphasizes the difference between a safe diabetes vacation and an unsafe break.
“A safe vacation doesn’t last too long and involves planning ahead so your diabetes control isn’t compromised,” explains Dr. Polonsky. “This doesn’t mean quitting your diabetes care altogether. You might, for example, decide to take a night off each week from your diabetes-friendly meal plan. A good vacation can restore your energy for managing diabetes.”
Dr. Polonsky describes an unsafe vacation from diabetes as something that goes on for a long time and may threaten your health. “Perhaps you have been ignoring your diabetes for years, or you take your medications faithfully but decide you don't ever want to check your blood sugars again.”
For those stuck in a burnout phase that could easily be classified as unsafe, seeking help and support is crucial. If you can't admit to your healthcare team that you’re severely struggling, tell a friend or family member whom you trust. Asking for help doesn’t mean you have to suddenly snap out of your burnout. It just means you’re going to acknowledge and work through it in a way that is safe, with the support that you need.
Including your healthcare team in a plan for moving from burnout to responsible diabetes management again is important. For instance, if you’re burnt-out by trying to maintain an A1C near 7.0 percent, you can talk to your team about aiming for blood sugars that would lead to an 8.0 A1C instead. The point is involving your team may be a comfortable way to lighten the burden and responsibilities of diabetes management while also keeping you safe. The more intense your burnout feels, the more necessary it may be to seek out professional help from a therapist who can support you.
Sarah found middle-ground by staying below 300 mg/dL and doing the very basics of her diabetes management responsibilities: taking her insulin, avoiding extreme highs or extreme lows, and occasionally checking her blood sugar.
“I didn't care to correct mild highs because I had a baby to take care of, and the last thing I wanted was to go low and not be able to take care of him,” she explains. “I would let my sugars cruise in the 200s without batting an eye. I would blind-bolus for carbs, rarely even taking the time to guess at the carb-count when taking my insulin. Diabetes was the absolute last thing on my mind, and I didn't want it on my mind at all. I hated diabetes and all that the management of it entailed.”
Sarah’s post-partum burnout lasted 9 months before she felt as though she could give energy towards the daily demands again.
“I firmly believe that diabetes burnout is much like the saying, ‘Depression is not a sign of weakness; it's a sign of being strong for too long.’ Diabetes burnout is very much the same—trying to be perfect for too long can set oneself up for a quick fall into diabetes burnout.”
For Kate, who’s burnout cloud is just starting to clear, she feels as though she’s coming out of the phase as gradually as she entered it three months ago.
“Be kind to yourself,” says Kate. “It was always in the back of my mind that this trend couldn’t go on forever but I needed time to let other things in my life settle down first.”