Diabetes distress and diabetes burnout are two terms that are discussed frequently, but what exactly do they mean? Fisher, Hessler, Polonsky, & Mullan (2012) define diabetes-related distress as “the unique, often hidden, emotional burdens and worries that are part of the spectrum of patient experience when managing a severe, demanding chronic disease like diabetes.” This distress is typically understood as relating to 4 interconnected domains: (1) the emotional impact of living with a chronic health condition; (2) the stress associated with diabetes management; (3) the pressures associated with managing social relationships while living with diabetes; and (4) the stress associated with managing relationships with healthcare professionals treating your diabetes.
Diabetes Distress and the Window of Tolerance Model
When I talk to clients about distress and burnout related to managing a chronic illness, I find Daniel Siegel’s model of the Window of Tolerance helpful. Your window of tolerance is kind of like your comfort zone; it is where you find yourself most able to feel safe, emotionally regulated and productive. However, stressful experiences can push you outside of your window of tolerance and into either in a state of hyper-arousal or hypo-arousal. It is normal to be pushed outside your window of tolerance to some extent, but when people are constantly living outside that comfort zone or swinging back and forth between the various arousal states their mental health typically suffers.
When outside of their window of tolerance, people can have trouble processing their experiences, making it more difficult to regulate emotional responses and think through challenges. States of high-arousal are where you would feel such things as overwhelm, anxiety, anger, aggression, or rage. Some people in this state describe a kind of internal energy or chaos. Hypo-arousal, by contrast, often feels heavy, devoid, disconnected, and/or shut down. Often times, people start out in a state of high arousal and, when this is no longer tolerable or sustainable, end up in a state of low arousal.
In terms of diabetes-related stress, people I see often relate to spending a lot of time in the upper end of their window of tolerance or in a high state of arousal; whereas those who are completely burnt out identify more with a lower state of arousal when it comes to their diabetes care. Considering that people often start out in the former, before ending up in a place of burnout, it can be helpful to recognize when you just starting to get pushed out of your window of tolerance, so that you can address those feelings sooner rather than later.
Finding Calm in the Midst of Chaos
It might sound counter-intuitive, but recognizing and sitting with your feelings—even when negative—can help ground you when things get overwhelming. This noticing can help you stay focused on the present, instead of getting caught up thinking about the ‘what ifs’ of the future or mulling over a past event that you have found upsetting. Incorporating daily mindfulness techniques, such as meditation, can help develop this skill of sitting with your feelings in the moment and support you in widening your window of tolerance over the long run.
In terms of reconnecting with your diabetes care, some practical things you may want to consider:
Start with what is working. Sometimes it is easier to build on what is working, than to just focus on what is not working in your relationship to diabetes. Consider the things that are going well with your diabetes management and bolster those skills. Often times, when those areas are stronger it will be easier to tackle the aspects of diabetes care that you have been neglecting.
Take small steps. When looking at the bigger picture, it can be easy to feel overwhelmed by everything you need to do, especially if you have lost touch with several areas of your diabetes management. Breaking down your diabetes self-care into smaller steps can help you feel less overwhelmed (and within your window of tolerance!) as you work on getting back into your diabetes care.
Beware of all or nothing thinking. Diabetes can be a fertile breeding ground for perfectionism. There is a relatively small window of what is considered ‘acceptable’ blood glucose control; this makes it easy to get caught up in seeing every blood glucose test and A1c as either ‘good’ or ‘bad’ and nothing in-between. Seeing everything as only bad or good, however, can be detrimental to your overall wellbeing—leading to overwhelm, anxiety, and distress around care. When you notice yourself engaging in such thinking, ask yourself if there is any possibility for any grey area.
Connect with others living with diabetes. Sometimes connecting with others who are also dealing with the daily challenges of diabetes management can help you feel less isolated and overwhelmed. Besides finding others that get what it is like to live and care for diabetes, you can learn from others how they cope with the stress of living with the illness.
Reach out to your diabetes team or a mental health professional. It is easier to ask for help before your distress becomes unmanageable or you reach the point of burnout, than waiting until a crisis occurs. If you’re struggling with the psychological side of diabetes, even if only for a little while, consider connecting with someone on your diabetes team that you trust or reaching out to a therapist that specializes in supporting people living with a chronic illness.
What to do when everything is too much
Diabetes is a taxing and difficult condition to self-manage. It is not uncommon for people with diabetes to experience distress and anxiety, sometimes to an extreme. It can be isolating, heartbreaking, and soul crushing. As Joan Williams Hoover, the author that first coined the term ‘diabetes burnout’, noted, “This of how discouraging it is to fail at something your really wanted to do. Then consider what it must feel like to have diabetes and be failing at something you never, ever, wanted to do in the first place.” If you find yourself in a situation where you are distressed to the point of not caring about diabetes, other things in your life, or life in general, it’s important to connect with crisis supports or a mental health professional.
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