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Diabetarrrggghhh!

Well. Just watched The Hospital, a Channel 4 documentary that this week focused on young diabetics that don’t take their illness seriously. While I was fully prepared to be frustrated at the patients, I did not expect to get so angry at the doctors and specialists.

I’ve had great diabetes care throughout my 14 years, and have been very grateful for all the advice (and obvs the life-saving medication. No biggie), especially in the early days/ But I could not believe the resignation of the doctor on the programme. All he did was bash the teenagers who didn’t care for their diabetes, and bemoan the burden they were on the NHS, without really offering any kind of solution to what was obviously a big problem. He had some fair points, and yes it must be frustrating when he sees so many kids go off the rails, but what struck me was his seeming resignation to the situation; to these kids’ fate, and the lack of intervention into their lives as diabetics and the serious consequences of the choices they were making. They were seriously in danger of killing themselves.

The minor issue of actual death aside, what riled me most – and has always riled me the most – was the lack of distinction made throughout the whole programme between Type 1 and Type 2 diabetes. There was not one mention of the inherent differences between the two; the fact that they’re completely different illnesses. They were just blended together as the same thing, for the unsuspecting viewer to take them as such. Because of the “epidemic” – as it was deemed on the programme –  of our growing obese population all developing the one word “diabetes”, (something I don’t dispute) people then assume we all have it because we’re fat and lazy and eat too much sugar. At the end of the programme the doctor likened the disease to smoking in terms of people’s sympathy for it. Outrageous. Type 1 diabetes is NOT self-inflicted. It is hereditary in some cases and in others, like mine, it just happens. Nothing to do with my diet or lifestyle. I wasn’t a fat eight year old. I was running around playing outside every single waking hour and a member of about eight sports teams when I was diagnosed. I have two brothers – my main concerns were riding bikes and climbing trees, and for most type 1s, the story is the same. How can a type 1 diagnosed at three years old be responsible for developing it? They’ve not even developed a dress sense.

I’m probably being very precious about this, but if we’re ever to help people, like these teenagers in the programme who were so at risk of all sorts of scary complications, we’ve got to at least get the facts right. Towards the end of the programme, this doctor’s exact words were “diabetes is a self-inflicted illness”. That makes me sooooo mad, and will do nothing but keep the perceptions of the disease as they are, which will mean nothing but more and more of the kinds of patients he was so dismissive about walking through his door.

Even if type 2s can (a lot of the time, but not all of the time) help themselves and in some circumstances even prevent the disease, many when they are diagnosed get a shock and take control. They DON’T end up in hospital with kidney disease and amputations, but of course that doesn’t make good programming. I’m a journalist; I know how editing works.  But I’m seriously incensed right now.

Okay, okay, so many of the teenagers on the programme weren’t giving themselves a chance. I’m not going to sit here like a smug little diabetic who never slipped up in my teens. Hell, I still slip up now. My last post tells you enough about that. Furthermore the reason I’m doing this blog at all is because I was far from perfect in terms of my control (for a while). But I never had a blood sugar reading of 50. 50!?! That’s a ticket to a fatal attack of ketoacidosis if I ever saw one. Made worse by the fact that the guy in question insisted “I know my body, and I know that I’m alright.” 50 is not alright. 50 is not even about long term complications. 50 is about dying in a number of hours because your brain has swelled inside your head.

One of the other case studies was a 15-year-old girl who hadn’t done a blood test in months, and when she did it for the camera the reading was so high it was off the scale of the meter. It just blinked ‘Hi’ at her, like some kind of warped sinister greeting. She showed the camera and gave a little grin. I may have been a bit intermittently shit with my diabetes for a couple of years, but I knew I was being shit and I knew I was damaging my body in a very serious way. It told me so itself every day that my glucose was above 10, let alone ‘Hi’ (which I think must be at least 35). I don’t know how she was functioning enough to even be coherent, let alone chat to a TV crew. But this is the learning curve.

So, what’s the action to be taken here? Lay it all out on the table for the girl – you’re going to die at 50, you’re going to go blind and your feet will be removed from the rest of your body? I was saying this the other day – I WISH someone had been that straight with me. You want to live your life so badly that, ironically you’re willing to have it cut dramatically short? No such advice came this girl’s way. Instead, the most timid community diabetes nurse I’ve ever seen sat in this girl’s house and squeaked at her: “MAYBE something you could THINK about doing is checking your blood sugars… Is that ALRIGHT?”

Are. You. Kidding. Me.

This is not Sunday service. This is life and death. Part of the reason I went a bit AWOL is because I thought I could get away with it; that it was okay and nothing would ever happen. Bad control is consequence free, was my thinking. How on earth was I ever led to believe that?? There seemed to be a lot of guilt-tripping of patients without telling them exactly why they were being made to feel so small and shite. Teenagers rebel. Give them the facts. Don’t sugar coat it or gloss over it and then bemoan the fact that only two patients turn up for clinic. I think if these young adults had it all laid out in front of them, they wouldn’t giggle so much when they spoke about their shocking bad control.

One thing all of the young diabetics had it common was the belief that their diabetes was stopping them from living a normal life. I can honestly say that, even now when I’m trying to be a model of health, I’ve never not been able to do something because of my diabetes. In the early days it was sleepovers, then came the alcohol, then came trips away, next on the list is travelling. Diabetes doesn’t stop me doing things – it pushes me further to accomplish more. I know it’s all very well me sitting here saying that with the benefit of hindsight; but I think a lot of advice IS patronising (and not always even accurate) and DOES make you think you’re different from everybody else. Although one of the girls seemed to gauge not being able to live a normal life as “I can’t go to the kebab shop”. Dreaming big, then. The lady in question was on 60 units of insulin TWICE a day. I’m no doctor but injecting 120 units of insulin a day has surely got as many equally scary, if slightly different consequences as not injecting at all!?

The doctor referred to people with diabetes as having a perception that they were ‘damaged goods’. This will only happen if he and many others keep making ridiculous, negative generalisations about diabetics. I’ve never once been ashamed of being diabetic. But there have been so many occasions when I’ve had to explain that I got it through no fault of my own – as if I had to justify my own illness. This happened a lot when I was growing up; when I had to tell people because I wasn’t yet old enough to not be someone else’s responsibility. This happens to inconveniently also be the time when you’re most conscious of how you’re coming across, and in the deepest depths of discovering who you are.

Prime example of feeding misconceptions: Year 8; I was 12 and happily sat in my PSE class. This is ultimately one of those filler classes that there isn’t even a GCSE for: “Physical and Social Education”. Sex, drugs and rock and roll in other words. That day we were learning about diabetes. Note: not type 1 diabetes, not type 2 diabetes, just “diabetes”. I don’t think I was even aware at that age, despite being in my fourth year as a diabetic, that there was another kind. I just knew my kind. The kind that came from nowhere and turned my world upside down. The one that made me question what horrible thing I had done to deserve it. Nothing, is the answer.

So there we were in class, a class that was already massively divided by who was cool and who wasn’t. It’s sad but true; that’s just the way it was. I was over the cool mark; but only just. I wasn’t a ring leader. But I was happy with my social ranking. Not helping my case was the teacher deciding to use me as a case study for diabetes. I was ok with it; the class knew and I wasn’t really embarrassed. Mid-session, a throwaway comment fell out of teach’s mouth: “Diabetes is hereditary.” Fair enough, in most people Type 1 is hereditary. But when she looked at me for a nod of assurance (from a 12 year old), I shook my head. “No-one in my family has it, just me,” I told her. Then, oh-so matter of factly, she just replied: “Well it must be to do with the fact that you ate the wrong types of foods when you were younger.” My mouth fell open, and she carried on with her lesson without so much as the batting of an eyelid for the ramifications of the words she’d just uttered. No-one had ever told me that before.  And you know what, because I was 12 and impressionable and believed that teachers knew everything – I believed her. I’ve never been so racked with guilt over something I didn’t even understand.

Misleading diabetes education has led to even teachers believing the hype. Her comments were said innocently enough, but there was no truth in them whatsoever. I didn’t know this for a long time, and neither did the other 24 kids in the room. Admittedly, they probably weren’t paying half as much attention to the class as I was; but the fact I remember it clear as day, given that it was over a decade ago, says a lot about how much these things stick. And how much diabetes education needs to unstick. Rapido.

The last thing I want is sympathy, in case you were wondering. Like I said before, I live my life as I do not because of my diabetes, but in spite of it. And good control is achievable, even with a penchant for Ben and Jerry’s and getting in from nightclubs at dawn. I’m not saying there isn’t a period of adjustment, but life isn’t going to wait for you if you stay in to make sure your bloods are ok the following morning. Life’s too short for that kind of behaviour. And more to the point, it doesn’t need to be that way. But how will the youth of today ever turn that corner if we’re constantly fed negative, dismissive and conflicting information, like on the programme I’ve just watched? We’re not, quite frankly. And as I’ve just been told by the very same programme, it will be “the first time a generation of kids are going to die before their parents”.

A pretty sobering thought.

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9 comments on “Diabetarrrggghhh!

  1. Wow fantastic article and really well put. The show had me furious. I’m not diabetic and don’t pretend to understand what this is like but my 3 yr old son has been diagnosed just over a year and explaining to others about it any it’s causes has been as hard as dealing with the disease it’s self (he’s type 1). The show put all of these people in bad light and I wonder how much of this was just for shock factor. I would love to see that consultant come out and say he had things taken out of context as I find it hard to believe those really where his views and if they really are then no wonder he has no one turn up to clinics. I live in the North East of England and we have the best consultant in the world (He runs marathons to provide kids with pumps…. which weren’t mentioned on the program) with out our team I don’t know how we’d have coped but they have always told us how well we are doing and “not let to worry about slips” as long as you correct them etc. They have made us away of the dangers but also that it’s easy to make it part of your life. There are a number of famous diabetics who have won gold medals stared in films and scored tries/goals these are the people I want my son to look to and people like your self who admit it’s hard but life is hard you get on and make the best of things.

    Thanks again for a great and well written article I’ll be following your blog with the hopes it helps me keep my son on the right track.. When he was rushed in to hospital at 2 he was in the same state as the guy on the show last night (if not worse) and it killed me that we hadn’t spotted it sooner, he spen a week in intensive care and was on 30 min watch for the first 3 days where they where checking all the time for him slipping into a comma. I couldn’t believe how blasé they where on the show about this guy going home and how easy they let him walk out..

    Anyway sorry for the rant… Take care and once again thanks for a great blog.

  2. I didn’t see the programme but you have expressed (with your usual elegance and pizazz!) something that really irks me. Sounds like a typical ch4 sensationalist approach, so thank god for people like you who can set the record straight. From a review in London’s metro: ‘her selfishness was eating up precious NHS funds…threatening other lives in the process’ *sigh*.

  3. Man, that programme sounds so irritating; it’s a shame but true that sensationalist programming is the best way to draw in them big viewing numbers. But this lack of type 1/type 2 distrinction is something i’ve only lightly picked up on – i’ll definitely be aware of the generalisation of diabetes from now.

    A reading of 50?! I’ve reached the upper 20s but that’s amazingly high. I probably have been higher and just not done my sugar levels out of fright – but that’s what is needed, a bit of fright!

    Another great blog, I feel as though i’ve borrowed a fantastic book from the library!

  4. Hi Chris! Good to hear from ya! I know 50 can you believe he wasn’t in a coma?! I’ve hit the twenties but that’s it. The programme had me raging a bit, this post has had a good response though. Please keep posting your comments, they’re really helpful (and always entertaining!) x

  5. Ahhh is if that review is out there in the Metro! Outrageous. I need to get some tips from others on how to reach more people. This post has had a good response so that’s something. Thanks for your comments again! x

  6. Hi Andrew, thanks for your comments, really appreciated.
    I can’t even imagine what it must be like having a child so young who needs to inject. Luckily I was a bit older and (somehow) seemed to just take it my stride, but I was old enough to learn about what was going on. It must have been so scary for you, but how could you have spotted it sooner? I was able to tell my parents that something was very wrong – not the same for children so young. Scary though, and I’m glad he’s ok.
    I do wonder if that consultant was taken out of context, he just came across so badly! I had a really good response to the blog yesterday so it’s good to know other people out there think the same about the programme. Diabetes education is so important… something needs to change I reckon. My consultant when I was younger was fantastic but I was a great diabetic then, so it wasn’t really an issue. You make such a good point about the likes of Steve Redgrave etc, diabetes doesn’t need to stop you doing anything with a little bit of help!! Thanks again for your comments and I do hope you keep reading x

  7. Reblogged this on thediabetesgame and commented:
    I was going to write something similar but now I don’t have to…

  8. I know I’m a few years late but nice post! I didn’t see the show but some of the other things like people’s perception of Diabetes and they whole Type1/Type 2 confusion can be quite annoying, and sometimes people don’t understand the fact that it’s nobody’s fault!

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