At the weekend someone told me that getting diagnosed with type 1 diabetes was the best thing that ever happened to him. Wait. What? Living with type 1 diabetes is a good thing?
I can be quite upbeat about diabetes – 4 years of living with something that you know is never going away will tend to force you into a “Sod it, let’s just crack on” mentality. After all, your choices are limited: spend the rest of your life in a pit of despair, or try to work out ways to keep it in its box often enough for you to pretend that life is normal. And get back to just having some fun like everyone else. But an incurable medical condition that you’ll never be able to control (because, yeah, stability is a myth perpetrated only by those who don’t have diabetes), and whose medication could quite easily kill you if you’re not completely on the ball at all hours of the day and night? Not something I could ever imagine being glad of. The guy is clearly nuts.
Living with diabetes – the good stuff
I kept listening, as Sam – a professional cyclist diagnosed with type 1 diabetes at the age of 10 – told us that without the condition, he wouldn’t have the career that he loves so much. Sam says of his diabetes on his website:
Did my diagnosis change everything for me? Yes. Is that a bad thing? No. I like to look at it in the following way. It gave and still gives me a routine, something that a lot of people at that age didn’t or don’t have. Even at my age now, people struggle to find a routine. Further to this, routine is something that goes hand in hand with my sport.
Routine and structure is something which my own daughter has had to learn in the 4 years she’s lived with diabetes. Sure, she’s as spontaneous as the next teenager, but that need to keep herself safe, and account for what she’s doing really makes her think through her choices. She takes responsibility for herself in a way that shows me she is already – at just 14 – an extremely competent young woman. That’s a life skill that takes some people decades to learn. I’m not one hundred per cent sure that I’ve learned it yet!
Talking About Diabetes
Sam was speaking at an annual event I love, Talking About Diabetes. I love it because every single speaker is an inspiration, someone with a story to inspire those living with type 1 diabetes to keep living – to do more than just survive. But I suspect I’d love it even if I wasn’t involved in caring for a diabetic. As I listened to tales of struggle turned into strength, and watched a dramatisation of growing up with diabetes, it dawned on me again – as it often does – quite how amazing people with diabetes really are. Type 1 diabetes is a colossal learning curve, but amongst the numbers, the blood tests, and the exercise and food management there is a fast track to life lessons most of us can only hope to acquire over a lifetime. If you can set aside the relentless hell of trying to control blood sugar levels for a moment, it is (just) possible to see diabetes as a gift. Here’s why:
Life Skills of a Type 1 Diabetic
Bravery I’m not talking about the guts kids need to start stabbing themselves with needles from day one of a diabetes diagnosis. I mean the strength it takes to battle the mental toll of type 1. Amy told us of her struggle with diabulimia, an eating disorder that sees sufferers omit or reduce insulin doses in order to lose weight, leaving them with often dangerously high blood sugar levels. 1 in 3 diabetics will experience an eating disorder, due to the pressure of monitoring, and counting every mouthful they eat for the whole of their lives. It takes a huge amount of emotional resilience to deal with that, and most diabetics acquire it in abundance at a very young age, quite simply because there is no other choice. It’s a difficult life lesson, but it’s one that will serve you forever.
Endeavour. This picture is of my daughter completing a Warrior Adrenalin Race – it’s like Tough Mudder, and I believe it’s not something she would ever have attempted, were it not for her diabetes diagnosis. She doesn’t enjoy camping, hates mud and cold, and has plans to work so hard that she can afford an all-inclusive, instead of a backpacking holiday. And yet she did this, just to prove that she could. I’ve met a lot of diabetics like this, and there were more in the TAD Talk room that weekend. You see diabetes as something that could stop you – stop you taking part in exercise because that affects blood sugar; stop you eating birthday cake because hello – sugar; stop you going on sleepovers, or taking long haul flights, because who knows what might happen? In my experience, diabetics rarely let that happen. Instead, they push their boundaries, and break the expectations, just to prove a point. And by doing that, they absolutely live their BEST lives, in a way they may not have contemplated pre-diagnosis. As an outsider, it’s quite awe-inspiring to see.
Humour. Let’s face it: diabetes is tough. It’s relentless hard work, with very serious consequences. It’s also often impossible – despite your best efforts – to control your own health, and avoid those consequences. Failure is an everyday inevitability. Developing a sense of humour is a coping mechanism, and I’ve yet to meet a diabetic or their parent who doesn’t have one. I watched one-woman show Pricks at TADTalk with tears running down my face, and ribs aching from laughing. Jade told the story of her own diagnosis aged 4, through to her life now as a mother and playwright with such a skilled combination of emotion and humour – it’s a play worth seeing, diabetic or not. My daughter has the most amazing comic timing as well. It’s a life skill that will serve her, and kids like her extremely well – in the workplace, with her friends, and most definitely with any setbacks she may experience in her future. It’s an absolute blessing that she’s learned it so young.
Empathy. One of the loveliest people to listen to at the event was actor James Norton. Diagnosed at 23, he was asked how difficult it had been for him to come to terms with type 1 diabetes. He told us that his younger sister had been diagnosed as a child, and how he was so in awe of everything she had achieved whilst living with the condition, that he knew he could handle it himself. His mother was diagnosed at 58, and he described the three of them as a lovely supportive unit, helping each other out with the inevitable fails and mishaps. He also talked about the people he works with, and how kind they all are, and of the type 1 diabetics he’d met at the conference who he’d loved getting to know. There was not an ounce of swagger in him, just a humility and open friendliness that comes with knowing that other people have it hard too, and wanting to support them.
It’s one of the things I’m most proud to see in my daughter. At a time when it would be easy to be arrogant and self-centred (inside tip: you can totally get away with this as a teenager – the label says so), she shows a level of understanding of other people that is way beyond her years. When I plug her for gossip, she’ll never tell me – it’s not her story to tell, she says. And when a friend behaves in a way she doesn’t expect, she thinks about what might be behind that, rather than taking it personally. That’s a skill I don’t think most adults have learned.
Resilience. Type 1 diabetics have it in abundance. Your blood sugar constantly surprises you, and not usually in a good way. At the beginning you strive to keep your levels in the magic range of 4-7. You quickly learn to tolerate anything between 3 and 10, because that’s much more likely. You beat yourself up every time you’re outside that range, or at the very least you worry about what those numbers might mean for your future health. Honestly, trying to keep your levels in a good place is enough to drive you to drink/ice-cream/medication/tears (delete as applicable, but I suspect most of those will apply at some point).
Eventually you learn to take deep breaths, correct, and move on, not thinking too hard about the possible consequences, or reasons. Because anything else will lead you to a mental health breakdown. It’s that kind of resilience that they try to teach in primary schools, but which most people won’t master until middle age or beyond. It’s a resilience which countless type 1 children and teenagers possess a long time before their peers, through necessity. It wasn’t willingly learned, but it’s a huge upside of living with type 1 diabetes. When a kid comes to terms with the knowledge that she can’t eat as much Haribo as her friends, or has to miss out on a game because of a low blood sugar, it gives her a sense of responsibilty, and maturity way beyond her years. Whilst it’s a devastating realisation, it’s also a skill that she can use to face other, regular setbacks throughout her life, from a young age. Fallouts with friends, not winning a prize, missing a test score, or not getting a job. Disappointment in love, bereavement, and financial difficulties. I believe she will cope with all of those things much better, because she first had to learn to cope with this.
There is an upside
If you’re newly diagnosed, or the parent of a new diabetic, I’m sorry that you’ve arrived here. And yet, I’m glad that you’ve found me. I cannot yet tell you that I’m glad my daughter has diabetes. But I can tell you that our lives are much richer because it came along. I would merrily hand back every life lesson we’ve learned, but I know that I send her out into her future with a set of life skills I couldn’t have equipped her with by myself. If life is a degree course, diabetes gave us the curriculum, the revision guides, and the best tutorials we could have wished for. If you’re just starting out, take these materials, and learn them well. You will never regret it.
And if you’re here to learn more, because someone you know has been diagnosed, this list of things not to say to a diabetic might come in handy!
Pin for later