I’ve been quiet about my diabetes recently. When the rest of my life crowds in, a busy time, the amount of head time I have to spend on thinking about diabetes declines. So I am in the middle of a busy time of my life, especially at work, where we have been going through major organisational change.
That is one of the issues about diabetes, it is relentless and you never get a day off. So I am living with the consequences of my lack of attention over the last few months, my blood glucose of late has been higher than I would like and I feel much more tired than usual. It’s a vicious circle and pushes me towards avoidance of a HbA1c assessment and any conversation with anyone about it really (you have no idea how much I have had to push myself to write this down). I really don’t want to hear the bad news from the DSN about an elevated HbA1c.
Although not written about extensively some commentators refer to something called ‘diabetes burnout ‘a term given to the state of disillusion, frustration and submission to the condition of diabetes. When people reach this place they ignore their diabetes, I assume in an effort to find some respite for the unremitting responsibility and thinking that diabetes places upon an individual. I can understand this as diabetes is there for every second of every day and doesn’t just affect me when I eat but affects almost everything; I have to test my blood glucose before driving my car, going to bed, every meal, any exercise, any stress, travelling – actually almost anything that is just part of living.
People with diabetes in my experience don’t usually want sympathy – it’s more of an understanding and forgiveness for those days when it just seems like it’s too much to cope with. Non-patronising encouragement works well for me and focussing on things that are good. I dread a discussion about a ‘poor’ HbA1c which feels more akin to a school report where I know I didn’t revise.
We know that people with diabetes are much more likely to suffer from depression but this paper also highlights that we know less about diabetes and anxiety and the impact on well-being. It urges nurses working with people with diabetes to be aware of the psychological impact of diabetes. It’s worth a read.
If you have diabetes or care for someone with diabetes and you feel you may be depressed there is useful information on the Diabetes UK site here:
I tweeted that I was feeling fed up about my continuously (or so it feels) too high blood glucose readings and I was told I was having a ‘POMPOM’ day (I know it wasn’t meant in a bad way :0) for the person who tweeted it!). I hadn’t heard the description ‘POMPOM’ before and can find no information about it on the web but apparently it comes from the Expert Patient Programme and stands for ‘Poor Old Me, Poor Old Me!’. I have to say I did have a bit of a reaction as sometimes I think I just want diabetes to ‘sling it’s hook’ and give me a day off – I am only human after all! I’m not sure POMPOM is a useful description of how it feels those days when I honestly don’t want to be bothered as I have far too many other things going on.
So – I’m fine – I know I’m resilient but I must get back my concentration and do some exercise. That’s my action plan!
I think for me the worst part about the thing is as soon as you get the diagnosis – you go from being a person to being a *diabetic*. The first thing that was given to me when I was diagnosed – age 36 was a magazine from Diabetes UK and every_single_person in it was grey haired and looked 65 or over. Made me lose hope altogether. I must say I have come across very few HCP who view me as a human being first and then a person who has diabetes. When I was recently at an out of hours centre – the nurse was more concerned with my BP and BM (again raised but I had just had my lunch ffs) than the carbuncle which quite obviously needed treating but wasn’t.
When I have issues with my HBA1C, its always put to me in terms of ‘have you been naughty?’ Ridiculous dietetic advice (one slice of bread for your supper..) – my life doesn’t follow that routine so what should I do? Makes me feel so patronised and well angry. When I’ve been in hospital, I’ve even been lifted of the responsibility of taking my own blood sugars and when I’ve tried to argue about not being hypo (BM was 4.5) being given a whole 330ml bottle of lucozade to drink and then not being tested for another 8 hours…
And the medics turn around and ask that people be more self reliant … Kind of makes me mad both with myself (for obviously doing it to myself) and the HCP.
I avoid taking my BM. I have a great reliance on how I feel to myself. I know when I am running a high blood sugar for more than a couple of hours and also know when its starting to plummet.
Sorry about the rant but I hate the way that that simple diagnosis made me disabled, when I mention my diabetes, I get pitying looks and so forth. Makes me want to have a lot of time off from it. Bit emotional today, sorry.
Thanks Annie, for those of us fortunate not to have a LTC your commentaries are a revelation. I was taught the physiology of Diabetes but never the day to day psychological impact. I think this sort of insight into living with a condition that is not going to be ‘cured’ should be mandatory CPD for all healthcare staff
Hi Elaine – thank you. I would gladly give my time to talk to HCPs about living with diabetes. I have offered but never been used. It may be that I’m a bit scary though. Anne
Hello hun. You know I agree. I’m sorry that you feeling so today. I too feel I’m not treated as Anne when I’m in the system. I write my blog carefully to see if I can get HCPs to listen and hear in new ways. Your comment/s help too. Thank you. Anne x
When I was clinical, I remember patients with diabetes who would get down and ignore the diabetes. I wish I’d been able to read this then – I think it will help young health care professionals to understand some of the difficulties and pressures involved when you don’t get time off from diabetes.
Living with someone who is also a nurse with type 1, this rings true in so many respects. I try not to lecture, he’s overweight (and knows it) but when I try to buy the good foods etc he just goes out and buys the other stuff anyway in copious amounts.
I also get frustrated at caring for patients with type 1 who have managed their conditition for years, but once in hospital, have to fall in with the policies on the ward, have staff check their blood sugars, follow our hypo policy, eat the smaller portions at meal times etc. their not ill they’ve just had a baby!!!
This is a great blog to let people know, not just those with diabetes but other long term conditions too, that it’s ok not to be ok with it. Let’s face it, you’d be a bit hacked off if you had a broken leg forever. We’re not 100% happy with everything else 100% of the time, no matter how much we love out partner/family/work, there will always be ‘tricky bits’, so it’s only natural that we have the odd ‘off’ day when managing such conditions too. I’m sure many reading this blog will be enormously grateful for, and reassured by, your honesty.
Thank you! Hospital is the worst. When had son it was awful. Husband had to bring me food! Its difficult to know how to handle us – I know that too. I’m wicked to my hubby sometimes. You probable deserve a medal. X
Thank you Lynne.
One of the family pets is well ill 😦
I’d love to be able to discuss the issue with HCP’s
Sorry to hear that Mandy. As the owner of a geriatric cat I know what you mean and I dread when he gets worse.
Hope you are OK. we should try to think of a way to tell our stories X
Anne, I love this blog! So feel like this and it is healing to know and share that even the most empowered people living with diabetes are also human, and have lives full of other stuff too! Thank you for articulating this so well.
I think it applies to living with all sorts of uninvited conditions and illnesses. I picked up this very transferable CBT approach to managing MS http://bit.ly/19H2GJg called ‘shrinking the monster’ which I have been thinking about in the context of DB
PS I will get very cross if anyone ever says I’m having a POMPOM day!
Well done. I’m a HCP whose listening (or trying to). We get this so wrong so often. Will try to improve!
An excellently written piece. There’s not enough written online about the psychological impact of living with diabetes and the concept of ‘diabetes burnout’ so thanks for sharing. And also for enlightening me as to what a POMPOM is.
Thank you everyone who replied and commented. This blog got lots of hits and comments and I’m pleased to say support. The care of people with Long term Conditions needs to include the psychological impact and burdens it places on people. I think I’m quite resilient but it gets me down occasionally too.
Thank you for such an insightful blog. As the parent of a CWD, it is important for me to try and understand the feelings and battles PWD go through. Although I don’t know you, you strike me as a person well in control of life, so to hear you have times of struggle with your diabetes makes me appreciate what my own son may encounter in his future. With this knowledge I hope I can be more understanding of his daily grind and less judgemental. Living with diabetes is a 24/7 mission, which, unfortunately, you cannot put on hold.
Thank you for your lovely comment. With your support I am sure he will be fine. I am independent and happy but like everyone I have challenges to face. I hope that we continue to see improved care during his life as I have in mine – I’m an optimist and I’m sure it will work out (PS I had a son too who is gorgeous and 22 now – life can still be good with diabetes) anne x
Hi Annie 🙂 I am the parent of a T1, and have T2 myself. Your story is so familiar to me! The notion of ‘POMPOM days’ actually created a vivid, colourful mind picture for me of girls marching, twirling pompoms! Much nicer image than the patronising ‘put down’ of ‘poor old me’ I intend to use it in a positive way next time I feel like I just want diabetes to go away! LOL.
You may like to check out the online counselling service at the following link: http://www.diabetescounselling.com.au/diabetes-and-wellbeing/dealing-with-diabetes/
This is an Australian Charity that my daughter started over 11 years ago to support people with diabetes.
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