Defining diabetes burnout

A T1Ds very personal experience of being burnt!

Diabetes burnout is an overused and little understood term.

Since it’s become more acceptable to talk about mental health the term has increasingly been bandied about to refer to the anxiety and stress of dealing with diabetes, but there is no formal definition or understanding of what this actually entails for an individual. It’s a subject that’s started to appear on diabetes-related conference agendas, both for healthcare professionals and persons with the condition and is also a popular discussion topic in peer-support groups.

But, whilst it’s healthy to see both distress and burnout talked about, it all seems wrong. Used interchangeably by many, the two terms are not the same!

I speak from experience, knowing the blackest of diabetes burnout.

I’ve spent months in burnout and admit that I am very protective about the term. The long weeks I spent neglected and isolated in a hospital room because no-one knew how to deal with the condition or me, I think has given me a right to take offence at anyone trying to explain my behaviour and feelings.

There was no tick-box for what symptoms to look out for, to know that I was burnt out. It wasn’t a gradual build-up of distress that escalated into burnout. I looked ‘normal’ on the outside and felt it on the inside too. I had no awareness that it would hit me abruptly, like a plane falling out the sky.

Prior to 2015, there were very few definitions of diabetes stress and burnout, reflecting the lack of awareness, understanding and more importantly now, quantifiable data. Definitions were very simple such as the following, published by Diabetes Spectrum in 2010.

“A sense of hopelessness and helplessness in managing diabetes that can lead to decreased motivation and engagement in self-care behaviors,”.

Later definitions, from 2016 — incidentally, the year I was in hospital with the condition — evolved to include reference to diabetes burnout as affecting PWD psychologically ie. a person’s mental wellbeing.

A psychological state that results from prolonged exposure to the demands of diabetes management, characterized by feelings of exhaustion, detachment, and negative attitudes toward diabetes self-care.”

Fisher et al., 2016

I do relate my experience with feelings of hopelessness and helplessness — no-one else can live our version of diabetes for us.

But most striking for me, is the total disengagement of managing diabetes that makes it burnout.

It’s the difference between not been on top of managing diabetes and letting it lag behind. It’s not being able to ‘pick yourself back up’.

Burnout affected me emotionally and physically. I had this feeling of my head being blocked and I totally surrendered to the physical side of dealing with diabetes. I existed by letting the nurses on the ward inject my insulin, check my blood sugars and all other aspects of my diabetes management to keep me in-check.

I was asked on several occasions about seeing a psychologist and they were keen to point out this wasn’t the same as a psychiatrist, but I didn’t know how this could help and I didn’t want anything put on an NHS record that I thought would mean being judged. I was locked into a state of just existing.

Not knowing how to deal with me, I was isolated in a room at the end of a corridor on a diabetes ward and generally ignored for weeks. It was around 6 weeks before a nurse suggested to me one Sunday afternoon that I could go outside for a walk with my husband. This was the turning point. I don’t know if it was just the timing, or if mentally I’d moved on, but something changed while I was walking around the front of the hospital building that day. I gave myself permission to accept my condition.

The grief I’d hidden inside for the life I thought I’d lost had resolved.

Now, I wonder if some part of diabetes distress and burnout is linked to diagnosis, an area that historically hasn’t been dealt with well by healthcare professionals at that initial consultation.

When referring to the burden of diabetes management, what does this actually mean? Healthcare professionals with often use the words ‘challenging’ and ‘relentless’, but those newly diagnosed with diabetes are often left to go away and ‘google’ the answers to key questions and seek out support from Facebook forums.

Rather than being left to our own devices, surely our mental health needs to be considered as important as the day-to-day management of having diabetes?

It’s been 7 years.

I still have days when it’s all too much, but I know I’m not alone in that feeling. I admit I have days off from my sensor, but not my insulin management — I just ‘wing it’ in terms of knowing my levels. It keeps the distress from ‘my door’ and hopefully the burnout too.

I think of my experience as having reached the limit defining diabetes burnout.

My diabetes management is now just a part of my routine in the same way as brushing my teeth. Having diabetes can still be immensely frustrating, illogical and all-consuming, but I long since made the decision to stop fighting like a warrior or superhero and to make each day an achievement in some (small) way.

It’s taken more than 6 years to write this blog and my experience is still raw today. Not all the details have been shared, and there are many that I’ve erased from memory. I hope my story helps someone.

I have type 1 diabetes and uses the FreeStyle Libre 2 which is provided on NHS prescription.