‘Manage your diabetes well, or complications will develop.’

My first diabetes educator was a very matter-of-fact kind of a person. I saw her for a number of years in the outpatient clinic at the hospital. She taught me everything that there was to know about diabetes, and supported me in my desire to commence insulin pump therapy. She had my back when my endo berated my very first hba1c result within a very short time after diagnosis. (Sidenote: ‘You have very poor control’ is still etched into my brain to this very day…).

However, I guess her limitation was that she struggled to empathise beyond the diabetes textbook with the reality of day to day life with diabetes. You know, those little life hacks and shortcuts that we so often take with diabetes. Those practices that might not be exactly by the book, and yet we do them because they make life easier for us.

My memory may be foggy here, but I believe that said educator first introduced me to diabetes complications, in that same matter-of-fact kind of way. It wasn’t a purpose driven conversation, but rather something that came up in a matter-of-fact kind of way during our education sessions. The take home message went something along the lines of ‘manage your diabetes well, or otherwise complications could develop.’ Throw in every other healthcare professional asking me what my hba1c was the minute I disclosed my diabetes, and it was easy to feel that the pressure was on.

I was genuinely scared at the thought of developing diabetes complications during those early years of living with diabetes. Complications was a twitchy word in itself.

I vividly remember driving home from an exam at uni one afternoon, and hearing of a random act of kindness on the radio towards a woman with diabetes who’d recently had a limb amputated. I just remember feeling really twitchy and feeling my feet and confirming that they were there and working. I remember the guilt I felt for the imperfections. Namely the thongs that I was wearing instead of closed shoes, that my feet were cold and that my blood sugars were yo-yo-ing.

Here’s the thing. Diabetes complications were always, always presented to me as a consequence of not managing my diabetes well enough. I don’t blame my diabetes educator personally, because I truly believe that it’s an institutional practice. Nobody talked about complications as (relatively) openly as they do now. And that they are largely manageable, treatable, and certainly not the end. Well done to the Grumpy Pumper and other pioneers in this space who endeavour to make talking about complications feel just as normal as talking about diabetes.

Back in August, Bionic Wookiee David Burren made an outstanding comment challenging why diabetes complications have to be called diabetes complications. They’re not diabetes complications, but rather health conditions that are exacerbated by diabetes. I love this sentiment so, so much. While managing diabetes well will undoubtedly reduce my risk of developing complications, simply having diabetes could put us at a greater risk of developing related health conditions.

With a great deal of conversation around diabetes and language on Twitter this week, I’d once again like to say that language is not about me being nitpicky over whether you call me a diabetic or a person with diabetes. It’s not about being ‘nice’ to a person with diabetes. When we’re talking about or to people with diabetes, the words we use and the attitudes we convey have power. They influence our thoughts and feelings – look no further than my late-teenage self.

Above everything else, ‘manage your diabetes well or complications will develop’ did extremely little in the way of motivating me to better manage my diabetes. It was the human connection around diabetes that did. I think we all have a part to play in supporting that.

Language Matters.

(And there’s a position statement for that, right here.)


  1. Tony Sangster

    Thank you Frank. From my reading and experience of diabetes self-management over 53 years, not as medical advice or opinion:
    I think Diabetes Australia might be going for “diabetes-related complications” as their way of expressing it – not sure until their poll is over amongst members.
    But the ranges of BSL set by the ADA of 3.9 to 10 mmol/l seem ridiculous if minimising or preventing diabetes-related complications is the aim. In the UK and part of Oz the upper limit is usually quoted as 7.8 mmol/l and Dr Bernstein quotes his non-diabetic range of 3.8 to 6.4 mmol/l – and as a long standing TID himself who has reversed a number of is diabetes-related complications he would seem to have some justification for his quote.
    That there maybe some genetic background to who does and does not seem to develop diabetes-related complications in the first 10 years or so is also of some import. Which is why I shake my head when some TIDs say they use say, 9 mmol/l as their maximum ‘in range’ as they figure that genetics might play a part anyway and why should they deprive themselves of a good time.?*?
    Also we have the Diabetes Control and Complications Trial in the 80’s to early 90’s which was stopped after 6 1/2 years because the incidence of complications between the 2 groups, one with tight control, HBA!Cs 6 to 7% and those on a conventional for the time control HBAICs > 7%, all commencing in their first year or so of developing TID and youngest being 13 years old. BOTH groups had some complications at 6 1/2 years but statistically far more in the conventional group and despite those in the tight group slacking off as the trial morphed into the EDIC trial and some of the conventional group tighten up their control the differences in the groups even 30 years on is present.
    How many parents and teenagers, young adults are told about these studies when they are first diagnosed with TID and given the best advice and results there are of studies about which methods offer the best control of BSLs etc?
    Yes , hypos which was much more frequent in the tight control group of the DCCT are quoted as a reason not to have too tight control and one wonders if the ADA has set its ludicrous range with just that in mind? Afterall a doctor could imagine being sued if a patient suffered harm from a hypo whereas advising the maintenance of higher BSLs might only cause harm much later and litigation/causation less easily established.
    And we have the ACCORD study which is saying that below HBAIC of 6% cardio-vascular disease (CVD) in diabetics increases in rate. But there are other studies which rebut this showing a straightish line with the higher the HBA1C, the higher the risk. The difference between the studies comes down to how you do the statistics but it is clear that for non-diabetics the higher the HBA1C, the higher the risk of CVD.
    There is a study in journal Pediatrics March 2018 – Management of Type One Diabetes on Very Low Carbohydrate Diets authors Lennerz, Ludwig et al – which surveyed the HBAIC, cgm readings, growth rates etc of adults and children following Dr Bernstein’s way of managing diabetes, with average HBA1C of about 5.5 (4.5 to 6.0), low BSL variability and the lowest rate of hypoglycaemia of any study of TIDs whether on insulin pumps, MDI +/- open or closed loop.
    This makes a mockery of the TIDS who claim 80 +% ‘in range when that range is 3.9 to 10 mmol/l – they appear to be kidding themselves, maybe?
    And with looping and a lot of current methods with say carb counting, DAFNE, DESMOND there is a tendency to be eating what you like and dosing for it. But except maybe for use of Affrezza, the intra-nasal insulin, is a TID (not including one who has had a successful pancreatic transplant) ever going to replicate the insulin release and effect on BSL of a standard (Westernised-style) diet of a non-diabetic?
    Insulins are getting shorter and shorter acting but is that just a tease (an expensive one for TIDs and Governments etc) as none can match what a fully functioning pancreas can do in a non-diabetic?
    Yet Dr Bernstein comes closest to managing non-diabetic HBAICS and range of any regime so far. Yet people shy away as though this is not possible and we can easily get conned into thinking that diabetes-complications are inevitable, if one lives long enough.
    And it is the children who develop TID and their parents helping them battle the unhelpful high carb diet regimes and less-effective-than-Bernstein methods who will likely bear the brunt of diabetes complications as they get older and may near care – all because Big Food and Big Science (some doctors, the invidious DAA. etc) choose to deny the truth or try to falsify it) that low carb diet is possible (and many carry out the diet as children and in pregnant women despite what the DAA advises without the DAA having any clear evidence).
    Yes, some will say, despite Dr Bernstein’s long time on his regime (N=1) that the low carb diet is not fully researched compared to the high carb diet but they forget that the high carb diet is failing many TIDs – see the articles about obesity and average HBAIcs increasing in TIDs despite an increase in use of CGMS and insulin pumps. Enough said.

    • Tony, I agree with you that HCPs tend to shy away from more ‘aggressive’ BGL targets for fear of hypoglycaemia. I’m personally of the belief that being able to achieve greater time in range comes down to knowing how to use insulin properly – and being able to flex that around the diet and lifestyle that’s sustainable for me. With that approach, I’m able to achieve around 80% time in my target range of 4-8, and less than 2% low. I don’t think improved targets will be achieved by judging people on their personal BG target ranges, or being narrow minded in terms of management approaches.

      • Tony Sangster

        Than k you Frank. There is nothing naroow-minded about finding the best management approach for the majority of diabetics (low carb diet works for T2Ds too, in many cases) Rather there is wilful blindness out there about the ‘eat what you like and dose for it’ mantra which seems to be promulgated as I said by DAFNE and DESMOND -type approaches. The evidence of harm is there in the TID obesity rates and non-improving and still too high HAB!Cs despite increased use of technology. Too much flexibility is a curse.

  2. Trish Greer

    Hello, Frank. You forgot to state wheat you think the nurse or doctor should say to a newly diagnosed Type 1 D. I recall at the early age of 11, being told by the health professional, “If you don’t take care of yourself, you’ll go blind by the age of 25”. It is now 54 years later of living with this condition and my last A1C was 5.7. I am still working as a traveling teacher for Deaf/Hard of Hearing students and strongly believe in taking care of myself by eating more healthy, exercising, and NOT trying to be like every other American. I enjoy eating vegetables and fresh fruit and preparing a variety of low carbohydrate entrees for dinner. Eating out is not something I like to do, like most other people. I think the health professional should say to the newly diagnosed T1D and his/her parent something like, “T1D is something you have to learn to live with for a long time, so be prepared to learn as much as you can about it and how different foods and drinks affect your blood sugar. It won’t be an easy road to travel, but YOU CAN DO IT IF YOU STAY STRONG and MOTIVATED TO DO YOUR BEST AND LEAVE THE REST TO GOD”.
    Trish Greer, T1D for 54 years, living in the USA

  3. Rick Phillips

    A wise doctor said to me the one thing that made such a large difference for me. He said, when you are sick and tired of being sick and tired you will take care of your diabetes. He was right. As soon as I was, i did. Of course it took 20 years. But the lose your legs or eyes was never enough.

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