Living with Diabetes Burnout

By Renza Scibilia

Renza Scibilia is from Melbourne, Australia and authors the blog Diabetogenic about real life with type 1 diabetes. Renza has lived with type 1 since 1998 and for the last fourteen years has used an insulin pump. She works for Diabetes Australia and is a proud member of the Diabetes Online Community (DOC). She is a diabetes consumer representative and a vocal advocate for ensuring the voice of the ‘patient’ is heard loud and clear.

The opinions presented in this blog post are those of the author and may not represent the opinions of Ascensia Diabetes Care. Ascensia have paid Renza an honorarium for her services as a contributor to this blog.

A study from Stanford University showed that people with type 1 diabetes make 180 diabetes-related decisions every day1. That is, of course, on top of the decisions that everyone else has to make (e.g. Which dress will I wear today? Do I need a second coffee before 7.30am? Should I drive or take the train to work today? Is it going to rain…do I need an umbrella?). It’s a lot, and it means that sometimes it feels as though there is a constant stream of diabetes commentary hammering our minds as we try to get on with our day.

Add this to the day-to-day demands that diabetes places on those of us living with the condition, and it’s not hard to understand just how difficult diabetes can be. Diabetes tasks are relentless, and we don’t get a break from them. Between carb counting, constant monitoring of glucose levels, administering medications, (sometimes many different types), managing diabetes technology, and having to take into consideration physical activity, stress and hormones…the list can seem (and is!) endless.   

So, with this in mind, is it any wonder that many of us with diabetes experience diabetes burnout at some point in our lives? Not only is it understandable to want a break from something that is hard work, not all that much fun, and that takes us away from things we would much rather be doing; it’s expected!

Diabetes burnout is defined as a state of physical or emotional exhaustion caused by the continuous distress of diabetes and ongoing self-management requirements. It can happen to anyone living with diabetes, and it can happen at any time.

Just as there is no one way to live with diabetes, there is no one experience that sums up diabetes burnout. It will be different for everyone. For some, it may happen frequently, and be a long and protracted experience. For others it could be fleeting and relatively short-lived. And some people say that they really don’t experience burnout at all. As ever, diabetes refuses to provide any sort of homogeneity!

It is not just the ceaseless diabetes tasks that can contribute to burnout. Dealing with stigma that seems to be a partner to having diabetes really adds up. Seeing nasty commentary about diabetes, or media reports that blame and shame and judge can contribute to those feelings of being burnt out.

My own experiences of diabetes burnout range from being wholly blindsided and finding myself in the depths of it all, to being aware of when I am starting to feel burnt out so I can do something about it. It took me many years, and help from my healthcare team, to learn to notice triggers and signs that hinted to me that I was heading towards burnout.

These days, I am far better at noticing when I begin heading down the slippery slope of burnout. I recognise that I am checking my glucose levels less frequently or forgetting to bolus for meals. I observe the helplessness I feel when I see an out of range number and don’t know what to do with it, rather than just look at it as a data point to work with. I feel overwhelmed and as though I can’t do anything right. Diabetes starts to feel really, really, really big!

And with all that, I notice that self-talk about diabetes becomes negative and hopeless and I feel bad about myself. I feel less resilient, less robust, more fragile.

Being aware of these changes in how I am feeling about diabetes, and my daily self-management has been really important to addressing burnout. In fact, this alertness has meant that I don’t wind up in a really deep state of burnout that is far, far more difficult from which to emerge.

Here are some things that I have found help me:

  • I understand that diabetes burnout is real, and it is completely acceptable to feel that diabetes is overwhelming. This helps me stop any self-blame or feelings of guilt I might experience when I start to ‘do diabetes’ less.
  • I have stopped feeling as though I am failing if I start to feel overwhelmed, instead telling myself that it is okay to feel that way.
  • As much as I have learnt to identify triggers that suggest burnout is on its way, this doesn’t necessarily mean that I can avoid going into a state of burnout. But naming it and accepting it’s there does help. Being able to actually say ‘I feel burnt out right now’ helps.
  • I re-assess goals and targets. This may mean that I accept being in range less time over the day or telling myself that it is okay to change my pump line every four rather than three days.
  • I have come to see diabetes burnout as a real, short- (and sometimes even long-) term complication of diabetes.
  • I seek help. I have been seeing a psychologist on and off for a number of years now and seeking help with diabetes burnout has been a recurring theme over those years.
  • My diabetes team understands the seriousness of diabetes burnout. This has been really important because it means that we talk about it, even when I am not in burn out, which has gone a long way towards normalising my experiences.
  • Having friends also living with diabetes is always important for me, but perhaps even more so when I am feeling burnt out. They know and understand what it’s all about and can share their own experiences and tips.
  • My family knows about burn out and understand their role in helping me through it. They are always so supportive and never try to ‘fix’ the situation, rather taking cues from me about what I need.

For people with diabetes, understanding burnout and how it can affect us is important, as is knowing where to turn for help, and feeling comfortable talking about our experiences.

Diabetes is a tough gig a lot of the time, and feeling overwhelmed by it all, and struggling to do all we need to do is nothing to be ashamed about. Rather, we need support and help to find our way through it.