The invisible diabetics

By | 25 March, 2011

Diabetes is crap. However, despite being diabetic, I consider myself to be broadly well adjusted and moderately sane and I generally have a good attitude to life, the universe and everything.

Considering I have been diagnosed with a condition that I’ll have for life and could well contribute to my untimely death, I believe I get on with life with – on the whole – a nice, positive look out.

However, sometimes diabetes does get in the way. There are times where blood glucose levels go completely out of goose. Why have I had three days of near constant hypos? Why is my blood glucose ludicrously high when all I’ve eaten is a tiny plate of overpriced salad?

Sometimes diabetes has neither rhyme nor reason and every now and then I get to the point where all I want to do is smash my own head against a wall seventeen thousand times in a row at the sheer frustration and unfairness of it all.

But, like I said, I’m pretty well balanced and with the help of a supportive wife and a positive outlook, I soon get over it and life returns to normal.

I think I’m one of the lucky ones. I was diagnosed with type one when I was quite old – twenty eight in fact. So I didn’t have to go through the hormonal trauma of my teenage years with a failed pancreas. I also have great and knowledgeable support from family, friends and colleagues. Life is pretty therefore pretty good, despite the odd diabetes-induced wobble.

What terrifies me though is the thought of the zillions of people out there who can’t and don’t cope with the endless lifetime marathon of diabetes. People with diabetes who have been worn down by months or years of stress, misery and lack of support. Because they’re so broken they are now, in effect, invisible.

For example, most of the people who read, lurk and comment on this site – picking a poorly written blog at random – will inevitably have their ups and downs but at least they’re engaging with other diabetics. At least they might get a modicum of comfort from the forum posting about someone’s terrible BG reading after a night of gorging themselves on trifle. We’ve all done it and it’s great and comforting to know that other diabetics shovel custard, jelly and sponge down their gaping maws too.

But there’s a huge bunch of invisible diabetics out there who are not getting any support and who are so worn down and demotivated that they just can’t help themselves to get help from their healthcare teams and the wider diabetic community. And that’s incredibly sad.

Looking after the diabetic mind is one of the most neglected areas of diabetes care. As I said at the top of the article, diabetes is crap. It’s difficult, lifelong and wearing on the mind and psyche. I just wish there was more we could do help the invisible diabetics.

28 thoughts on “The invisible diabetics

  1. Mike

    Absolutely agree @tim

    My word printable word for diabetes as the moment is “ass ache” πŸ™‚ He won’t like me for say this, but when we had dinner the other night I tested and showed off a high figure something like 13/14 and with a anxious look, I let off some expletives.

    Andrew simply turned around and said “that’s nothing mate” so we deal with it, move on. Comforting words by people who have been there, done that and got the t-shirt!

  2. Claire

    This is spot on Tim, know from experience that when there’s no support it’s a very lonely place! But I’m sure with the widespread use of the internet, more and more of the ‘invisible diabetics’ will find support – from sites like this. And when you realise you’re not the only one, or that you deserve more support from healthcare providers, it’s very empowering. So, thanks Tim and everyone like you who work hard on sites like this!! πŸ™‚

  3. Tim Post author

    @clairev – Thanks Claire – that’s very kind of you to say. I would like to note that any support I provide is purely accidental, I only do Shoot Up because I like writing crap about diabetes! πŸ™‚

  4. Tim Post author

    @clairev – Ohh, and well done on posting the 3,000th comment on the site since the Great Database Meltdown of 2009 (which lost all the comments on the earliest articles!)

  5. Charlie

    That was me… but I’m slowly coming back into view. Great article Tim – and this site it indeed a life line – thank you!! x

  6. Tim Post author

    Thanks @Charlie – again that’s more kind than is merited. What do you think brought you back into view?

  7. Charlie

    20 years of ignoring my health hasn’t done me much good, but by some miracle I’ve mostly got away with it.. Having my son and having someone who is completely reliant on me kick started the process – I don’t put myself before his needs (despite being told to on a regular basis) and probably never will. Being persuaded to go on the pump has been a huge step – life saving to be exact – so here’s to the future looking less bleary and keeping positive.

  8. Mike

    @charlie Hey Stranger!! πŸ™‚ Think what you can do with those 20 years behind you, sharing your experiences is a priceless commodity in todays world.

  9. Charlie

    @mikeinspain – thank you! Haven’t been logged on for a bit – some catching up to do – and share all that experience as you suggest (or strange useless info – keeping up with @teloz πŸ˜‰ )

  10. Claire

    Wow, feel honoured to have posted the 3,000th comment πŸ™‚

    Charlie, how long have you been on the pump? I’m coming up to my 20th year of having diabetes (was diagnosed when I was 12) and really want to get a pump now. Also want to start a family in the near future, and wonder how much more control the pump gives you?

    1. Charlie

      @ clairev – I’ve been on the pump just over a year now – love it! Much better control, but then again, anything would be as I wasn’t having all my mdi’s. During my pregnancy was the only other time I had perfect control – I wasn’t worth it, but my son was. It was hard work, but I imagine it would be much easier with a pump. Good luck! Felix is now 7, and well trained to share Harribo in an emergency and fetch me bottles of lucozade!

  11. Claire

    Hi Charlie – don’t quite think I’m ready to share my dolly mixture (my hypo sweet of choice :)) with anyone yet ha ha. Seriously though, definitely going to push for the pump on my hosp visit next month. Sounds like it’s definitely worth the hard work.

  12. Alison

    @Tim You’re spot on. I’m always amazed by how happy I feel after I’ve had a conversation with other diabetics, it’s a strange feeling, that reassurance that someone else really understands. My advice to anyone with D is always to get out and speak to someone else with it, or at least find a marvellous little blog like this where you can whinge with like minded people.

    I would like to see more formal support though. D, like other chronic conditions, is (unsurprisingly) shown to increase the risk of depression, yet access to decent counselling and support services is like gold dust. Which is stupid, because if you can get your mind on your side, it makes the pancreas bit much easier.

  13. katherine cromwell

    I think this website is brill we all have our ups and downs and sharing is a natural healing process. So well done to Tim and Alison ! @Claire push for the pump! down in Poole, Dorset D mums have succeeded very well with their pregnancies. Due to hormonal roller coasters it is so much easier to adapt using the pump then Mdi. Try googling Poole hosp Diabetic Centre they may have some advice?

    At Poole they have now introduced a counsellor for diabetics which is a very good idea as the stresses of every day life do effect our Diabetes and if stress is prolonged needs to be helped.

    1. Claire

      Hi Katherine, thanks for your advice. I actually asked my GP to refer me to a different hospital as my existing one doesn’t offer the pump at all (or any information about them) so just waiting for the appointment next month! The new hosp is very pro-pump so nervously hoping they will offer one. Am on up to 6 jabs a day, around 8 blood tests a day, eating very strictly and still can’t seem to control it! The best HbA1c I’ve had is the last one, and that was 7.4. Can’t seem to get any better than that, and apparently it needs to be below 7 before pregancy. The counsellor is a great idea, hope in time all diabetes clinics will offer that.

  14. Annette A

    Yes, agree with previous comments – having somewhere I can just let off with a ‘WTF is going on’ and ‘Oh shit, this is going on’ and have a whole bunch of peiple who not only accpet but also understand is invaluable.
    And as @alison says, getting your own mind sorted is a (maybe the) major part of being on track.

  15. Katie

    Great blog you two!!!
    I would agree supporting people emotionally is a huge boost to anyone. Unfortunately the NHS don’t really offer support this way, very much sorting the physical problem and sending you off home, which is often not enough.
    Talking from experience, speaking to someone about your issues, worries, concerns really helps you deal better with what you are going through.
    Keep up the good work!x

  16. Dave

    First up a huge thank to Alison and Tim for putting this together and even more so for keeping it running.
    Secondly thank you for all the contributions from everyone else.

    I’m relatively new to the shootuporputup party but it’s been a huge help to me recently. After about 17 years of almost total self-management, that would seen many final written warnings if I’d been managing people instead of my body, it’s a huge eye-opener to see that there are others out there who haven’t achieved perfect HbA1cs (excluding swotty @Tim of course!) and who don’t change needles and test stabby things after every use. I feel incredibly naive to find out after 32 years things such as insulin can work differently depending on time of day.

    I’ll admit I did have a forum delve a few years ago on one of the bigger forums but soon dropped it after a few ‘look at me I’m perfect, why aren’t you?’ responses to relatively honest questions. The size and friendship on this site is a credit to all contributors and I pass on my thanks to everyone who has ever posted anything – the true value of something like this is the feeling of being able to ask anything without being made to feel either stupid or a naughty schoolboy – I’ve had enough of that from previous medical practitioners!

    Hurrah and keep up the good work!

  17. Mike

    C’mon people, please please please stop all this worship style, bowing, vomiting to @tim and @alison.. We’ll never hear the end of it… *Puke* πŸ˜‰

    Only kidding folks.. Apart from everyones 3rd favorite Spanish Blog, this site with us little minions who follow in their hundreds is by far the best site.. Plenty of banter, humour, problem solving and problem sharing.

    Some may disagree πŸ˜‰ but friendships have been made and that is the icing on the cake for me.

    *More vomit*

  18. Tim Post author

    FFS – I’m puking my breakfast out through my nose here!

    (Actually, your comments are all far too kind – I just like writing stuff, we didn’t mean to help anyone!)

    @seasiderdave – if it makes you feel any better my swottish A1Cs hid a shit-load of bad results – the highs and lows averaged each other out to give a good result. One of the many reasons A1C is a bit rubbish (Mike has a post on just this here:

  19. Spike Jones

    Hi Guys. My first post here after finding you through an American diabetes site which is beginning to annoy me with its “why aren’t you perfect too?” attitude. That & having to convert to the Yank BG measure, which as far as I understand, is only used in the US…

    I’ve had the diabolics for over 30 years & have always had a very hard time getting any sort of control. They used to call it brittle but that’s not PC enough any more. It has been better since I’ve been on the pump but I have little or no hypo awareness, Nights are always dicey as the first thing I know is when I’ve been treated by my partner or find myself collapsed somewhere other than bed. It was halfway down the stairs this morning πŸ™

    Given the above & how we are all told if we don’t do better with our control, we will end up blind, on dialysis & with no legs, how is it possible not to get depressed? It took me years of stupidities before I realised that I have major psychological issues with my diabolocs. Getting any sort of help or counselling on the NHS is a non-starter. My consultant, bless her, agrees with me that there should be a psychologist or at least a counsellor on the clinic staff. If we could get help with what it does to our heads, we could manage the rest of it much better. I’m having to pay to see a psychologist privately because if I don’t sort my head out, I’m not going to be around to see my daughters grow up.

    Thanks to Tim & Alison too. This place is a wonderful refuge

  20. Tim Post author

    @spikej – Hi Spike – welcome to Shoot Up. Feel free to join in with the unending misery and despond! πŸ˜€ Oh, and congratulations on having the scariest avatar on the site πŸ˜‰

    That’s really crappy with the hypo awareness (or lack of) – my awareness is usually pretty good, but the ones that creep up on me scare the whatsits out of me – so I can at least slightly empathise.

    I couldn’t agree with you more that counselling is critical for diabetics – or indeed anyone with a chronic illness (/other chronic illnesses are available/). I think it’s bordering on criminal that more physiological help is not available for the diabetic masses – especially for kids. But hey hum.

  21. Charlie

    Hey @spikej I think you’re my (possibly a little older)! I was told years ago that I was “brittle” aka crap at looking after myself – depression still rules here, but agreed, having a child does give you a great reason to try and get things sorted. Still trying to reset my headspace, but @tim and all are a great help – welcome, and share the burden! x

  22. Lesley

    Great post Tim. (I’m trying to comment on posts closer to the posting day, honest!).

    There IS something we can do to help the invisible diabetics. Putting aside your plans for world domination in the DOC (mwahahahaha), we can get involved in local and national standard-setting meetings (; write to your MP or MSP about issues in your area, including pump availability; encourage your MP to attend meetings of the All Party Parliamentary Group for Patient Access and the APPG for Medical Technology for starters!
    Does your GP practice have a user involvement group? Get involved to raise standards of D care in the community – and point out that burned out diabetics are probably depressed rather than “non-compliant”. Ongoing clinical psychology should be a regular part of clinic visits – or at least the annual review.
    Like others, I think a particularly wonderful thing about SUoPO is the frequent mentions of getting it wrong (in the posts and the comments) which frees people from thinking they must be perfect all the time. Now how do we get that across to healthcare professionals who see the invisible ones?

  23. Mike

    @lesley1966 Hey up, you are right on the money Lesley.. In someways I think we need to take what we have achieved so far from the Medtronic meets and similar focus groups and try and apply some of those principles offline..

    Just because they call it “social media” does not mean we can not meet up face to face! 【ツ】

  24. Tim Post author

    Hmm… I don’t like meeting other diabetics – it might be catching after all! πŸ˜‰

  25. Alison

    @Lesley1966 Absolutely. It really only takes one or two strong people locally to make a big difference to diabetes care. Very few Dr’s set out to to a bad job, in a lot of cases they simply don’t get the feedback they need to know what and how to improve. If you get bad service from a company you tend to complain, but the majority of people don’t see themselves as customers of the NHS so just accept it when the service isn’t right. Then nothing improves and we get stuck in a downward spiral. Get out there people, most local user groups are crying out for some intelligent input.

  26. Hairy Gnome

    Whilst I agree that psychological help would be great, I find that I’m pretty cynical about counselling and counsellors. I took the first year of a counselling course, and I was disappointed that it appeared to be a very incestuous organisation, geared to making money.

    I’ve suffered from depression too, and still do on occasions. The effects of diabetic neuropathy can tear your ego to shreds, and hypoglycaemia does the same to your body. Being able to log onto this site and see that there are others with the same problems, the same fears, the same insecurities means a great deal, and helps to fight the psychological side effects of the condition.

    Even more precious is the way all the contributors leaven the misery with humour as well as compassion. Even in my darkest hours I’ve read posts on here that have made me laugh out loud, lightening the load, and driving back the darkness. This site is unique and precious, and I hope Tim and Alison are running it well into their dotage!


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