Why every single member of the Diabetes Online Community™ is wrong

By | 10 March, 2016
Diabetics indulging in the latest fad diet, yesterday

Diabetics indulging in the latest fad diet, yesterday

From time to time, when I have nothing better to do – like invent a perpetual motion machine, herd cats or enjoy a warming beverage from my chocolate teapot – I have a look around the Diabetes Online Community™ and see what all the cool kids are talking about.

As an aside, and as I’ve mentioned before, I started writing your soaraway Shoot Up merely to amuse myself and to coagulate (if “coagulate” is the right word?) some of my thoughts about this chronic condition that I’d been lumbered with. I have no idea what Alison’s motives were – probably money and glamour. I suspect that if Alison hadn’t started writing about diabetes in 2009, her insatiable lust for bling and fame would surely have led to a career in Gangsta Rap. But Gansta Rap’s loss is surely diabetes’ gain.

Anyway, back onto the topic of my needlessly inflammatory clickbait headline. Despite being a pastime enjoyed by a relatively small percentage of the population, there are quite a lot of type one’s blogging, tweeting and Facebooking.  Everyone, of course, has opinions relating to the best way of living and coping with this never-ending pain in the bum.

I’m trying to avoid sounding like a wet management consultant, but everyone with diabetes is “on a journey” (I know, I know…) and everyone is at different stages of that journey.

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A member of the Diabetes Online Community™ pontificates

When I was first diagnosed, I was forced to go from knowing nothing about diabeteaids to knowing an awful lot in a very short space of time. As a result, I could only get my head around relatively simple stuff – the basics of carb counting, injecting Lantus once a day, turning up for appointments. If you had talked to me about super-bolusing, temp basals, CGM or the latest carb-counting fad I couldn’t have coped. Too much, too soon.

Ten years later and I know a little bit more about being pancreatically challenged. In the pub, over a glass of wine, I can confidently sketch out the differences between square and dual wave boluses on the back of a beermat. Whether people want me to or not.

But this doesn’t mean I’m at the cutting edge of diabetes knowledge or practice. And neither do I want to be. I’ve got other important stuff to be getting on with – drinking wine in the pub for one.

My point is that everyone is at a different stage and has different a relationship with their diabetes and, equally, everyone works at a different pace. Fred might be extraordinarily knowledgeable about the latest academic papers and is a massive advocate of the brand new “Carbohydrate Cramming” diet from America. But that doesn’t mean that Fred’s any “better” than Gladys who sticks in some Humalog three times a day and doesn’t really like the sound of being connected to a pump; or, indeed, that Gladys is “wrong” with her approach.

Gladys might decide at some point in the future that a pump is for her or she might become an unwavering evangelist for the latest “Lo Protein, High Fat, Medium Carb” fad diet but, in the meantime, if her way of dealing with her diabetes works for her and she’s happy then she’s absolutely, categorically, 100% right.

So unless someone is on exactly the same path as you and at exactly the same stage of your diabetes “journey” then anything you say about someone else’s diabetes will be wrong. This, of course, includes me – so I’ll shut up! And why not comment below and I can point out why you’re wrong too! Isn’t this fun!

27 thoughts on “Why every single member of the Diabetes Online Community™ is wrong

  1. Annette A

    You are, of course, both right and wrong. (Hark at me, sitting on the fence.)
    I cannot (or rather, should not, because it is quite within my capability of doing so) tell Gladys what she must do. But I can suggest to Gladys things she could do that have helped me, or suggest things she needs to watch out for. It is then up to Gladys to make her own decision as to what exactly she does. Provide, that is, she actually has an opinion/mind, and isn’t just of the follow the herd mentality that does tend to affect a lot of internet blog/forum type people. But not, of course, anyone who follows this lovely blog, we’re all here entirely of our own volition and would likely do the opposite of anything it suggested on here just cos we’re like that.

    Reply
    1. Tim Post author

      Both right and wrong? Are you a politician in your spare time Annette? 😉

      I think you’ve hit the nail on the head – it’s the subtle difference between saying what people “should” do and what people “could” do. Former bad, latter good.

      Reply
  2. Paul

    100% agree.
    I make no attempt to hide not liking the DOC, diabetes is something i live with but frankly their are better things i can spend my time on than more diabetes (else I’d end up in the loony bin) although i get that others feel differently & find it helpful.

    Within the group there are 40+ solutions given with good intentions to every problems poised. That’s fine, knowing options is great but any advice given should always be taken with a pinch of salt & probably with a discussion with a professional because how well can you know someone from a comment on Twitter.

    More problematic to me is that they seem to fail to realise they’re only a small percentage of diabetics & they’re trying to speak for all of us.

    The thing I have found refreshing is being able to see & interact with consultants (whilst like in real life) I don’t always agree with their views it’s easier to have a decent chat away from scheduled appointment pressures

    Reply
    1. Tim Post author

      “…frankly their are better things i can spend my time on than more diabetes”. I agree; fancy a pint?

      I agree with your point about advice from the net; as our wonderful legal page says “As you already know, the correct person to speak to about your diabetes is your general practitioner, specialist nurse or consultant. It’s best not to make radical changes to your medication or lifestyle based on the content of a badly-written blog. Unless you’re an idiot.” This sums up my views!

      I’m interested in your point about “… they’re trying to speak for all of us.”

      Reply
      1. Paul

        The pint is the unsung hero in the diabetic care team!

        Re: speaking for us… I first noticed this when my consultant called me a PWD rather than diabetic following an online campaign I had to put her straight that I’m a diabetic (I understand wanting to be called a PWD but politely request that your doctor calls you that rather than assuming that I find diabetic offensive & campaigning to change my identity)

        I’ve seen coverage of many people talking at the conferences & on blogs who have agenda’s which would no doubt make their lives better but don’t seem to grasp it may make others worse.

        So for example there was a push to get libre nhs funded & when pushed on where funding was to come from it was take it from cgm because it does the same job cheaper – it doesn’t

        There was another well I’m on MDI so take it from pumps as it’d improve my life

        And another on one pump for all, actually I find that one harder to disagree with as long as there’s an upgrade route (I remember forum posts & discussions on here which made me realise we all have different things we find important in a pump)..

        After reading a post from Mike (paraphrased) that the role of nice should be to give me information on what I can do to improve my diabetes & to quantify what the improvement will be so that we could decide where we could be bothered to put the effort in I find myself musing that maybe Nice should set a level of funding for a diabetic & we can choose how to spend that & whether we need/can afford to top it up – although that’d be a bit of a nail in the coffin for the NHS I suspect.

        Oh yes I also saw someone who was for a medical conference (not open to non-medical people) the representative of PWD online.. I must’ve missed the voting for that one & fails to address the fact there must be far more diabetics not engaged online than there are

        Reply
        1. Tim Post author

          Could we say that the nub of what we don’t like is being lumped – by our own kind – into one homogeneous group, where we are all the same and want the same things?

          Reply
          1. Paul

            Yes – I did think on the tube home yesterday I could’ve summed it up much shorter & better!

            There’s surely irony in the situation.
            What I do to manage my diabetes shouldn’t impact on anyone else’s care & vice versa, it’s one of the reasons I like doctors making NICE recommendations as they have no personal or emotional attachment to the disease – I’d just like it of there were fewer accountants with no emotions as well 😉

            Reply
            1. Tim Post author

              Ah, but is a purely objective, unemotional assessment of your diabetes a Good Thing?

              If, for example, we used the much maligned but objective & unemotional measurement of diabetes control – A1C – then my control post-pump is “worse” than when I was on MDI. But my quality of life is much better; my “good” A1C hid a load of massive swings in my blood glucose.

              Reply
  3. Alison

    I thought we’d sorted this ages ago? Shoot Up is always right, everyone else is generally wrong, unless they agree with Shoot Up. Where’s the problem?

    Taking advice from the internet is a funny one. I apply a healthy dose of scepticism to all advice received – whether it’s from the internet, the woman in the supermarket or my consultant. Because they’re all coming from a different point of knowledge – either experts in their own experiences, technical experts in the condition but not expert in my life, or complete idiots whose only purpose in life is to make everyone else look good.

    But some of the info I glean from them is useful. I got an insulin pump and CGM as a result of online research. Aside from my desire for fame and fortune, I started blogging because there was so little decent info about pumps and CGM online when I was looking for it (that wasn’t simply adverts or technical specs, I wanted real life experiences that weren’t just a sanitised case study on a manufacturers site) I thought it’d be handy to share. Even now I might tweak the way I use my CGM based on what works for someone else, but ultimately I make the decision. Everything else is just input of varying quality.

    Reply
    1. Tim Post author

      In terms of advice, I act as Managing Director of my diabetes. I’m ultimately in charge and I take advice from a number of different sources who have differing statuses. My consultant up at the Royal Infirmary is “Vice President of the Pancreas” and gets quite a lot of say; my Specialist Nurse is “Chief Technical and Operations Manager” and gets listened to in relation to every day, practical stuff.

      The Internet – Shoot Up excepted, of course – is generally the tea-boy with the limp and slightly vacant expression – a bit useless, but occasionally coming up with a bright spark of insight, which I then refer to the other members of my team.

      Reply
      1. Alison

        I tend to see the internet as Head of Innovation and New Ideas. Can be a bit wayward but when managed with a firm hand can open up fantastic new areas.

        Reply
        1. Tim Post author

          Thinking about it a bit more – I consider social media to be the tea-boy with the limp, etc., and I would agree with you about Head of Innovation if we’re referring to websites, blog and some forums (or should that be fora?)

          Reply
    2. Tim Post author

      Alison – while we’re on the topic, was part of the reason for Shoot Up’s two year hiatus caused by you recording and releasing a new album of Ghetto Rockin’ Gansta Beats and Loops?

      Reply
        1. Paul

          So a multiwave/dual bolus album then?

          A sudden burst of excitement followed by a slow lack lustre drip of enthusiasm on listening?

          Reply
  4. Angie

    I’ll have you know that I am always right, about everything!*

    But then I also agree with most of the points made in the comments, so does that mean that everyone else it right too? Maybe it’s just ShootUp readers… I think I need coffee.

    I think I probably treat things similar to Alison – everyone has their own perspective, and I take bits form everyone and consider them, but I’m the one making the decisions. I have a lot of love for the DOC, as it has helped me hugely in the past (in particular back when it was mostly forums and twitter wasn’t really a thing), but I can totally see Paul’s point about it not being perfect – and I agree about being annoyed when people claim to speak on behalf of all diabetics, or even on behalf the DOC, as though we’re some kind of cohesive, uniform group, when we’re really not. It’s why I’ve become much more picky about the DOC places I choose to hang out in – there are some places where I can’t bear the evangelism, or the infighting, or even the well-meaning advocates who are assuming we all want the same thing. I think it definitely has a place, but I stand by ‘your diabetes may vary’ as the best way of approaching these things, and I wish more people would remember that my diabetes is probably not the exact same as your diabetes.

    Now, tell me more about this carbohydrate cramming diet, I think that sounds like something I could get into. Purely for improving my diabetes management of course…

    *This statement may or may not be true.

    Reply
    1. Tim Post author

      I don’t know who’s right any more; I’ve lost track…

      I think you’re correct though – the thing that gets my goat and I suppose what I was trying to incoherently express above is that we’re all different, our diabetes does vary and to suggest or hint that we’re one cohesive lump is at best inaccurate and at worst belittles our individual foibles.

      Of course the DOC(TM) is useful – we wouldn’t all be discussing this here if it wasn’t – maybe I just don’t like the term DOC(TM)?

      Now; onto my new carbohydrate cramming diet – it involves 1) chips 2) beer c) pizza d) sticky toffee pudding e) a shit-tonne of insulin!!

      Reply
    2. Paul

      I have a slim list of people I still interact with in doc (I suspect they’re probably people I’d enjoy a beer & a fruit pastel with) & yet often our views on diabetes are radically different.

      It has been useful at times for example the new Medtronic pump wouldn’t have been on my radar & I found out about it through doc & the intentions of people are good, but for me unlike forums there’s no easy way to turn it off.

      As I finished that post yesterday I saw several retweets of a figure that just seems made up, no link to a study, no proof, no one questioned it, it was just repeated over & over again – I don’t disagree with the aims behind the said figure but decisions in my mind have to be made on facts.

      & that means I need to get away from it all else veins start bulging in my neck!

      Reply
    3. Alison

      “I think I probably treat things similar to Alison” – this pretty much guarantees that you will always be right about everything Angie.

      I’m very selective about the DOC too. I venture occasionally onto Twitter for about an hour once or twice a year and always come back with the same feeling that I’m not learning anything of any value from a diabetes perspective, nor am I being particularly well entertained. I have a select group of blogs I frequent, and a couple of Facebook sites on specific subjects (pregnancy & diabetes because I got a lot of good info there so hang around to share some of my knowledge, and a user group for my pump which has some good members I can learn stuff from, and I can offer some help to newbies too).

      I’m quite happy in my very selective and exclusive corner of the DOC. I see it as a massive supermarket, I don’t want to buy most of the stuff they sell but they do have some useful stuff I wouldn’t like to be without.

      Reply
  5. Mike (eduad)

    Fascinating discussion (as expected). And very timely.

    It may interest you (or fill you with horror) that I am currently working on a little project that is hoping to provide a reasonably ‘safe’ set of signposts and act as an introduction to connecting with other people online. The hope is that by briefly explaining what TwitFace and Blogstagrams are and pointing to some of the less rubbish ones that cover particular topics people might get some helpful pointers as to where to make a start without ending up in the darker corners or round the back of the bike sheds getting your lunch money nicked off you by Big Alan.

    There are a few HCPs involved and some pancreatically challenged types to review the suggestions. So maybe *shock horror* Drs themselves might feel comfortable suggesting it to patients.

    We are hoping to add more wise people once it’s up and running. If anyone’s interested or just wants to be kept informed – let me know.

    Reply
    1. Tim Post author

      Good idea Mike. We had something kinda similar on Shoot Up in the early days but I was too uninterested to maintain it properly.

      I think everyone gravitates to their own niche; some people like to moan and ‘woe is me’ about their diabetes (this is, genuinely, not a criticism of those people; being gloomy can be a good way of dealing with bad stuff (no, really)); other people just like technical stuff and cold, hard facts; other’s like the more social aspects of the DOC(TM) and so on. In other words, there’s no one size fits all website.

      So you could have an index of sites based on personality – “These sites will suit you if you’re in the depths of despair… These will suit you if you like campaigning for diabetic rights … These will suit you if you enjoy badly, written whimsy and grammatical pedantry” etc. It could work!

      Reply
  6. Mike (eduad)

    “badly-written whimsy and grammatical pedantry”

    Nope… can’t think of anywhere. Hmmm. Anyone?

    *and yes you will have noticed that I corrected your punctuation to make the compound word.

    Reply

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