Dec. 11 -- Living with diabetes -- especially if you need insulin to survive -- is a never-ending job that can be life-threatening if done wrong. That constant daily stress can lead to "diabetes burnout," a new study says.
Diabetics experiencing burnout are mentally and physically exhausted, feeling detached from their condition and apathetic about their need for self-care. Diabetes burnout can last hours or days, and sometimes weeks, months or even years, the researchers said.
"Diabetes is unique as a disease because the self-management requires constant activity, mental energy and physical energy," explained Felicia Hill-Briggs, immediate past president for health care and education for the American Diabetes Association.
"You have to take medication, check your blood sugar, cook healthy, eat healthy, make sure you're getting enough physical activity, and be sure to balance all those things," said Hill-Briggs, who was not involved with the study.
She likened living with diabetes to running in a marathon: Even the best-trained and most elite athletes sometimes collapse at the end of a long race, with nothing left to give.
"You reach a point where you can't do any more until you step back, and rest and rejuvenate," Hill-Briggs said.
The new study, led by researcher Samereh Abdoli from the University of Tennessee, included interviews with 11 women and seven men with an average age of 38 who have type 1 diabetes. Seven people said they were currently experiencing diabetes burnout. All said they had gone through it during the past year.
One 36-year-old woman said: "It's exhausting, it is exhausting. It really is, to constantly take care of yourself and have to worry about everything you eat, everything you do, every move you make."
A 22-year-old woman echoed that sentiment: "You're tired all the time, I mean physically, you're just feeling old, feeling worn out."
Besides exhaustion, the study identified other themes:
- Detachment: Patients described feeling detached from their identity as a person with diabetes, from their self-care, and from their support systems. "I didn't want to think about diabetes and I didn't want to be a diabetic anymore," said a 42-year-old man. A 51-year-old woman said: "I've had enough; I would rather deal with the result of the disease."
- Other contributors: Researchers pointed to factors such as the constant burden of self-care and failure to achieve goals such as target blood sugar levels. "Having to test your blood sugar all day when you have other things going on? Not what you want to be worrying about. Waking up in the middle of the night? Low blood sugars at times that are inconvenient? Just that happening over and over again. I think you experience burnout," explained a 31-year-old man.
- Strategies for recovery: Participants reported strategies to prevent or overcome diabetes burnout, including getting support from friends, family or health care providers, and trying to maintain a positive attitude. "I combat my burnout by reminding myself of what's more important," a 42-year-old woman said. "I'm getting to see my daughter grow up, I get to still work and do the practice that I love, I get to see new things and do things, and I have to remind myself of that, and that's how I combat it. ... Be thankful for what you got."
Becky Lois is a child and adolescent psychologist at Hassenfeld Children's Hospital at NYU Langone in New York City. She also wasn't part of the research. "Burnout is almost unavoidable," Lois said. "You didn't ask for diabetes. Sometimes it's out of your control. And it's really hard when it feels like everyone is telling you what to do."
It's great, she said, if people can recognize the distress that precedes burnout and work with their health care provider before burnout occurs. A simpler regimen might help. Maybe a loved one could remind you to check your blood sugar, or stop repeatedly reminding you. Having conversations with the people in your support system can really help, Lois said.
Hill-Briggs agreed it's better to be proactive. "Try to plan ahead of time how you might deal with burnout," she said. "Do you want to go off your insulin pump for a week and do shots instead? Do you want to eat that food you never allow yourself? Or have a few days where your blood sugar won't be as tightly managed?"
Hill-Briggs urged patients to ease up on the guilt trips. "Relax the sense of guilt," she said. "Give yourself permission to lift your foot off the pedal for a little bit. It's impossible to be perfect all the time."
The study was published in the December issue of the American Journal of Nursing.
Learn more about diabetes burnout from the U.S. Centers for Disease Control and Prevention.
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