With most things in life, you can take a break if you feel fed up.
Diabetes is not one of them. The relentless nature of it, the frustration, the interruptions, the alarms, the admin. Sometimes you just don't want to do it anymore, and you find yourself experiencing diabetes distress.
While diabetes technology does a great job of reducing the mental burden of living with T1D, it doesn't make it go away. Sometimes the technology itself adds to the stress and frustration.
Since the beginning of January, my pump alarm has gone off 80 times. The alarms have interrupted my sleep on 9 nights - that's 40% of my January nights so far. Yet I get up every morning and get on as if nothing has happened, and nobody else has a clue.
I wish I had known when I was diagnosed 18 years ago that diabetes distress was common. That feelings of burnout would come and go throughout life with diabetes. That it's OK sometimes to do the absolute minimum to stay safe while you gently coax yourself back to 'doing diabetes' again - and it shouldn't need to be kept from your healthcare team as a shameful secret.
Almost 50% of adults with type one diabetes experience high levels of diabetes distress, and there are currently no effective treatments available on the NHS.
Happily, there is hope on the horizon. Earlier this week I joined the first Programme Steering Committee as the Independent PPIE member for D-Stress, a major new project led by Professor Jackie Sturt from King's College London. As Kings College notes:
“This research has the potential to transform the way diabetes distress is cared for and make it a part of everyday diabetes care. This could create a first-of-its-kind treatment in the UK to focus on the emotional aspects of living with the condition.”
I can’t wait to see how it unfolds.
To read more about the D-stress project click here: Helping people with type 1 diabetes to D-stress | Diabetes UK
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