Last updated on November 14th, 2021 at 12:57 PM
More than 4.9 million people in the UK and Ireland have diabetes.
While the vast majority have type 2, around 8% of this total figure have type 1 diabetes – and being diagnosed is life-changing.
Type 1 diabetes happens when the body can no longer produce its own – or enough – insulin (which we need to allow glucose in our blood to enter our cells and essentially keep things functioning), because cells in the pancreas, which produces insulin, have been attacked.
Why this happens is not yet fully understood. But it means glucose in the blood can build up to dangerously high levels, so people living with type 1 need to monitor their blood sugar and take insulin medication (via daily injections or a pump) to help keep levels steady.
There’s more to the picture – diabetes can also impact in other ways, including emotional wellbeing – and when you’re first diagnosed (which can happen at any age, including early childhood and teens) there may be a lot to get your head around.
We asked a range of people living with the condition about the things they wish they’d been told when they were first diagnosed, or what they’d tell their younger selves now…
A journey of lows – and many, many highs
Chris Bright, founder of The Diabetes Football Community was diagnosed with type 1 at age eight, 22 years ago.
“This condition you’ve been given isn’t something you could’ve done anything about.
The universe chose you because you’re strong enough to cope with this lifelong battle – and it will be a battle.
You will wonder why it’s happened to you, why you’re on your own at times, and why you have to go through the pain, injections, sleepless nights, name-calling and hypos. This will be tough, but you will be able to do this, and your football will help you through.
“But let me tell you, this condition will teach you to be brave, to never give in, and to recognise that life is a precious gift.
Through these lessons, you’ll believe anything is possible, push the boundaries of what is possible with diabetes, and you’ll do it with empathy for the people around you that is almost unteachable.
“You’ll have structure and organisation taught by your diabetes routine, which will make you ready for the world. And the determination you have to show that diabetes will never hold you back, will drive you to achieve so many things.
“You will go through periods where it’s really hard, but this will allow you to truly appreciate the magic moments that will come through your hard work. All you need to do is to keep believing, keep working with your diabetes, and say yes to opportunities. Never let diabetes define your journey; just bring it along for the journey.”
Find community and embrace things you enjoy
Katie Collins, 42, a photographer and collage artist, was diagnosed six years ago after having her first child.
“Being diagnosed with type 1 is confusing, a whirlwind and a huge amount to take in. It can feel daunting, scary and worrying – but you will find your feet and you won’t feel so alone.
With type 1 diabetes, there are good days and not-so-good days, but there’s an online community happy to help and technology is advancing so fast.
“I’ve really benefited from going along to type 1 events and meeting people, sharing stories and advice.
Also, from a mental health point of view, taking time to do things you enjoy – for me, that’s art, photography and having fun and adventures with my family.”
Diabetes isn’t your whole life
Donna Scott, 38, an Excel spreadsheets expert, was diagnosed while still at school.
“I’ve been diabetic for over 25 years and I wish I had known that not every doctor knows about diabetes.
They might talk like they do, but it doesn’t mean they’re correct.
When pregnant, I was actually told that pregnancy doesn’t affect diabetes – my blood sugars definitely dared to disagree on that one!
“Also, take control of your diabetes, don’t let it control you. Diabetes is just one thing you have to live with, it doesn’t have to be your whole life.”
It’s a learning curve for parents too
Jude Hughes, senior active events fundraiser at the Juvenile Diabetes Research Foundation, is mum to 12-year-old twins Amelie and Albie, who were diagnosed with type 1 aged two.
“If someone had told me that, overnight, I would become my children’s pancreas, I may have listened more in biology.
Overnight, you become a nurse, a doctor, a dietician, a mathematician and a sleepless zombie!
You will need a notepad in the kitchen, along with a calculator as you meticulously calculate the carbohydrate content of every meal – I think my specialist subject on Mastermind would be ‘carb contents of all foods on the shelves’!
“You need some ready answers as your kids say, ‘You told me this wouldn’t make me different to the other kids at school’, as you pack them with healthy snacks because you want their blood sugar levels to remain stable in the classroom.
You need to be able to reason with them when their blood sugar is high so no, they cannot eat that cake/ice cream on the beach yet…
You need to hold their hands when they cry that they ‘hate’ diabetes, and ‘why them?’ There are no words for that one.
“And you constantly tell them they are amazing and strong and they will be thankful one day they have type 1, as they will know their own bodies so well, and will be fit and healthy because they have looked after themselves so well, with so many hospital check-ups.
“My advice is to take it slowly, be kind to yourself as well as to your kids, involve their friends, their friends’ parents, and ask for help.
Empower them in stages so that by the time they are old enough, they can do it all without you – they can then go on playdates, sleepovers and school trips, without a parent tagging along!”