If you have experience with type 1 diabetes, you’ve probably noticed the words ‘diabetes burnout’ popping up more and more on sites for different diabetes support organisations or on social media. Perhaps you recognise it as something you or someone you love has been through. If you’re unfamiliar with the term however, you’re not alone.
According to statistics from leading charity Diabetes UK, as many as 44% of type 1 diabetes patients suffer from burnout relating to their condition at some point in their lives; however, statistics could be even higher as there is so often a stigma and guilt surrounding what we deem to be ‘neglect’ of our condition, and many of us keep it a shameful secret. Not managing to keep things out of control because of the sheer overwhelm is all too often dismissed as ‘rebelliousness’ or ‘carelessness’.
I for one have had experience much earlier on in my diagnosis of the wagging finger in the endocrinologist’s office telling me to sort it out and get that Hba1c level down. One doctor pointed out my oh-so-cool-at-the-time scene hair and checked Vans and said: ‘You chose to dress like that, right? Choose to sort your blood sugars out. It’s your responsibility’. I was fourteen at the time; more concerned with when the next issue of Kerrang! was out and wondering whether the really pretty guy from 8U still thought I was a stalker than worrying about whether I’d remembered to take my Lantus shot. I grunted and left in the same huff as I always did after clinic appointments, shoving my headphones into each ear. What did he know? He’d learned it all from a bloody textbook.
Where did the consideration for the actual mental burden of diabetes come into this? Numbers are logical, taking insulin to lower blood sugars is logical, but where was the logic in not expecting our brains to totally frazzle with the sheer pressure and responsibility of trying to manage such a demanding condition on top of the stresses of everyday life?
Fortunately, diabetes mental health care appears to be slowly improving and is being talked about more and more as part of treatment. Last year, it was ‘diabulimia’ that was brought to the forefront (I covered this in an article for The Independent last year),and now both patients and health professionals are starting to address ‘diabetes burnout’: the sheer mental toll a 24/7 condition can have. This week I was delighted to see new resources on the subject made available from #SERENConnect (look up the hashtag on Twitter; they’re doing some brilliant work) and am always interested to hear about new developments in transitional care from children’s to young adult’s diabetes services, which is where so many of us are likely to feel abandoned.
However, when burnout does happen, it can be difficult to address. We often feel a huge sense of responsibility and guilt, which stops many of us from speaking out. Even though I like to write positively about diabetes and focus on the good things that we are still able to achieve, none of us are immune to being completely exhausted from the endless fingerpricks, needles, cannula insertions, numbers, carb-counting, moodswings, circulatory problems, sleep disruptions and seemingly endless appointments; not to mention the effects on our blood sugars from things like exercise, alcohol, stress, food, illness, travel and changes to our everyday routine.
And unlike Love Island, you can’t simply feel pissed off at the stupidity of it all and then switch it off for something more pleasant. It’s a full-time commitment.
Despite my go-getting attitude when it comes to taking on challenges and not letting diabetes get in the way, I recently hit a point of burnout following a stressful unexpected event at the end of last year. I stopped sleeping. I cried a lot. I couldn’t even run to clear my head (the very thing which usually make me feel empowered and in control of my body) because I was too exhausted. The thing is, diabetes doesn’t just adapt when life doesn’t work out as expected. Just as your world gets turned upside down, so does your diabetes control, and having wildly fluctuating blood sugars to try and manage on top of having to deal with unexpected events can feel incredibly overwhelming. My blood glucose monitor had taken several hard thwacks against the wall since I turned up on the doorstep of my family home last New Year’s Eve, à la Bridget Jones (minus the turkey curry and the brooding Colin Firth in a reindeer jumper).
It wasn’t until then that I realised still how terrifying it is to ask for help. You instantly assume you’ll be judged. You’ll have the wagging finger and the telling off for being such a naughty, lazy little girl (I forget sometimes that I’m 27). Deep down I know that my diabetes team would no doubt have helped me out. I’ll always remember one nurse during a time in university who gave me a massive hug and spent half an hour just building my confidence when it came to study and relationships. No lecturing. No chucking me out of her office. Just a very human, understanding response that motivated me to make the changes and let me know I was supported (plus she called one of my exes from uni ‘an absolute frog’, which made me burst out laughing for the first time in a while). But still, sending that email and asking for help is more terrifying than any race I’ve run, exam I’ve sat or travel I’ve done. It ended up consigned to the ‘drafts’ folder of my emails every single time.
I spoke to other people with type 1 diabetes about the subject and was astounded to find that every single person, even if they don’t name the term directly, described the experience of burnout at some point in their lives with the condition. And so much of it came down to the feeling of being totally alone with it.
One of the people I spoke to, Sian*, has lived with type 1 diabetes since she was 8 years old. She is 28 now. She told me, ‘I think mental health provisions should be part of all hospital clinics. I know this is the norm for some hospitals but it definitely isn’t for all.’ On the subject of care in her area, she also described the experience of moving straight from children’s clinic to adult’s clinic as a massive factor in feeling isolated with her condition, stating that the lack of people her own age there made her feel increasingly abandoned. In the UK, there are now many ‘young adult’s’ clinics and more transitional care, but this is still not the case in some areas.
Laura*, diagnosed when she was 9 years old, recognised that her feelings of overwhelm were also related to feeling very much alone with her condition. She says, ‘I know it would have been a lot easier to be able to speak to people with diabetes. Though I eventually did find people through friends and through Twitter, it would have helped back then; especially from about the age of 12. I ended up getting into the habit of bad control. I was put on a course with my hospital but there were only four of us and it was a bit awkward.’
So what is being done to tackle this? Diabetes UK now run groups and events for people with type 1 diabetes to meet each other, which is helping to tackle this recurrent theme of feeling isolated. These don’t necessarily have to be directly related to diabetes; there are all sorts of events available, from days out to cookery classes. You might not need to talk about and focus on diabetes all the time, but sometimes it’s just a help to know that the person next to you gets it when you’re having an off day.
For more information on getting involved, please see the Diabetes UK website.
So, how can we learn to recognise the signs of burnout? Some to look out for include:
- not testing blood sugar levels.
- skipping insulin.
- becoming withdrawn/depressed.
- feelings of overwhelm.
- feelings of isolation.
- becoming angry when the subject of diabetes is brought up.
- changes to eating habits (e.g. eating a poor diet or skipping meals altogether).
- appointment letters mysteriously fluttering, unopened, into the recycling bin.
And what do we do once we’ve recognised that burnout is happening? It’s all well me leaving you a checklist of things which make sense (e.g. talk to health professionals, get in touch with organisations, speak to friends and family), but deep down we all know these are the right answers; they’re just not easy to do. Sometimes we just need to start small.
What about the little day-to-day things you can do when things feel difficult?
Sian says little treats like a glass of wine and a movie night or some yoga really help her to enjoy things outside of just focusing on diabetes. She makes sure she’s always planning treats for herself to look forward to. I can’t emphasise how important this is. When people work hard all year, they splash out on holidays, right? But what about that one job that’s 24 hours a day, 7 days a week? Why don’t we reward ourselves for the work we put in to manage diabetes? You wouldn’t expect yourself to work without a break or any reward, and you should treat your diabetes the same. After all those injections, appointments, infusion site changes, hypoglycaemic episodes and missed hours of sleep, you bloody well deserve deserve to spoil yourself now and then!
Do something that makes you feel great. Go to a gig. Invite friends round for dinner. Sign up for that didgeridoo class (I’m not even joking about this one; I’ve genuinely agreed to it). Give yourself some mental freedom for a bit. I recently splashed out on drum lessons for absolutely no reason other than that it just looks like a damn good release to hit things and still look cool doing it (and because secretly, deep down, I still want to be Travis Barker, only without the mohawk). And for that hour, testing my sugars didn’t even cross my mind. I just got totally immersed in trying to get the rhythm right. I felt normal.
And when things get really overwhelming and start to impact across all areas of your life, take a deep breath and be brave. Pick up the phone. Send that email. Sit your parents down. Tell a friend over coffee. Get in touch with a support group. Reach out to your nurses. Find a counsellor. Just get support. Loneliness and isolation is a huge factor in burnout, but the truth is, you’re not alone. We’ve all been there and we’ve all got your back.
The numbers on your blood glucose meter do not define you. The numbers cannot tell you that you are a failure. Remember, you’re not a machine and you’re not Batman — you’re a human trying to cope with everyday life as well as doing the job of a malfunctioning pancreas. That’s a pretty big deal. Give yourself credit for doing the best you can do.
Online support for diabetes burnout is available at:
Diabetes UK support forum – https://forum.diabetes.org.uk/boards/?_ga=2.215299799.1114322270.1529132326-233605192.1529132326
Beyond Type 1 app – https://community.beyondtype1.org/landing?space_id=139402