We talk a lot about hope at the Type 1 Diabetes Family Centre. You will have seen our “life without limits” campaigns or heard us talk about not letting type 1 hold you back.
But is this realistic? Are we selling false hope over here? In the face of the world’s most complex self-managed condition, are we just sugar-coating things? Is it feasible to live the life you want despite this thing that has no off switch, never goes away and has a nasty habit of kicking you when you’re down?
If you listen to some health professionals, it certainly doesn’t seem like it. There are only so many times you can hear “You’d better take care of yourself, or you’ll go blind and lose your legs” before you kind of feel like the best you can do is stave off the inevitable complications for a few more years. You don’t need to look far to see a story about a car crash, a child misdiagnosed or seen too late, or how diabetes is the “epidemic” of our time.
Even if complications were inevitable (spoiler alert – they’re not), this is a recipe for worry, misery and sometimes even a feeling like you’re living on “borrowed time”. What’s the point of a good HbA1c when you’ll be blind, wheelchair-bound and in constant pain in a few years, huh?
Why all the misery then?
There’s no denying that life with type 1 diabetes is tough. When the time comes and a cure finally arrives, I’ll sharpen my elbows to be first in line. But we still seem to be stuck 100 years in the past when we had just discovered insulin.
Type 1 management used to have nothing to do with trends, with response to food, to changing insulin sensitivity and requirements over the day. It was a game of trying to use maybe a few data points a day to dose insulin in a way that didn’t knock you unconscious or have you running to the toilet every 5 minutes. The insulin we used was slow, unpredictable and hard to extract (those poor pigs). Our management strategies were basically one step up from taking 2 units in the morning and hoping. Our long-acting insulins, when they arrived, were as predictable as a 2-year-old after a sugar binge.
No wonder we focussed on staying alive and minimising the impact of complications while we could – it’s all we had.
The problem is that much of the conversation, much of the narrative, and much of the messaging we give people with type 1 diabetes has never moved on.
No one said to me when I was diagnosed that I could live the life I wanted despite the condition. They told me type 1 was expensive, risky, hard and I’d better do what I was told. An endo said to me that the best I could do would be to slow down the rate of complications. What an inspirational message for a grieving young adult.
You should be angry if that’s the message you’ve been given. Because while it is still possible for type 1 to kick your butt throughout your life, it is not even close to being inevitable.
Advances in management
Think of how far we’ve come in just over a century. Right now, if you live in Australia, you are likely using a CGM to monitor your blood glucose levels every 5 minutes. EVERY 5 MINUTES! Finger prick tests used to take longer than 5 minutes just to get a reading!
Think about all the technology we have at our hands, all the information, all the knowledge. All the learnings of hundreds of thousands of people living with type 1, all the little tips and tricks we've learned on the way. Think about how much better we are at picking up even the first sign of a problem and doing something about it. I mean if I get one more reminder for an eye test I'm going to scream but at least I know that if retinopathy ever did pop up, we'd be lasering that thing so fast my head would spin.
This isn’t some pie-in-the-sky, pollyannish view of the world. I’m not saying everything is sunshine and rainbows, but we should have hope for the future. Not just because hope is more fun than misery, but because we have the evidence to back it up.
Evidence-based hope
The phrase “evidence-based hope” is a phrase I first heard from the legendary Bill Polonsky, President of the Behavioural Diabetes Institute in the US. Bill, just like me, gets really upset when he talks to people with type 1 who are beaten down, hopeless, discouraged, feeling like terrible things will inevitably happen to them.
He found that when they surveyed people with type 1, over 65% believed that they would end up with serious long-term complications, no matter what they do[1]. I40 years ago, yeah, odds were you’d end up with a complication eventually. Most people after a few decades had impacts on their vision, their kidneys, and their nerves. A lot of people felt like the best thing they could do was ignore type 1, because it was going to get them eventually. Live life now, because it might not be here tomorrow.
But it’s time for that BS to end. Because today...
Bill’s data shows that after 30 years with type 1, your likelihood of severe vision loss, amputation, and kidney damage is really low. More like 1% for vision loss! 1%! And this data was from before CGM access when we were still stumbling around trying to manage our BGLs with maybe 3 points of data a day. Now we have something like 288 readings a day. I can watch, in graphic detail, that cinnamon bun kick my butt and see exactly when the rage bolus catches up... and then overcorrects it...
Things are improving at a dramatic rate every day.
Lifespan
Still not convinced that we can do this? Still thinking that I’m being naïve?
If you’re old like me, or even if you’re a recent member of the club no one wants to join, you probably heard that as a person with type 1, you lose about 10-15 years of life expectancy. OUCH! I remember crying my eyes out when I learned that. Would I be around for my kids? I’ve met people who had kids early because they were convinced they were going to die, and soon.
Again, let’s turn to the research, which shows that death rates are falling fast, particularly in places like Australia[2]. We’re living long lives with type 1 and any gap between us and people without type 1 is closing fast. How cool is that? And we haven’t even really seen the impact of things like CGM etc on lifespan as they’re only a few years old in the grand scheme of things.
Are there still people dying too young from type 1? Of course. But the likelihood is falling fast. It’s not an inevitability. You don’t have to feel like no matter what you do, you’re going out young. You can live a long life. So don’t go blowing your life savings just yet.
So, what does all this mean?
If I had to pick one thing that makes a huge difference in people’s experience of type 1 diabetes, it is their beliefs about what will happen to them.
Easy to say I know, but if we’re fighting a battle that it seems we’ll very likely lose, it’s hard to muster up the courage to face it. If we think the best we can do is lose a little bit less badly, it’s not particularly inspiring. The message is not 'get over yourself and just get on with things you sad sack'. Life with type 1 diabetes is still hard. It still sucks some days. No matter what you do, it will still be there; an annoying little monkey on your shoulder.
But the message is: you can live the life you want to live with type 1 diabetes. It won’t always be easy, and yes, it would probably be easier without type 1. But it's doable. You just have to put type 1 diabetes where it belongs - an unwelcome, but permanent passenger on your life journey. Don’t let it grab the steering wheel. Just give it its bag of jellybeans to keep it quiet in the backseat.
The TLDR
Ooh, I’ve really ranted on this one. So, if you’re scanning this just looking for a few sexy takeaways (TLDR stands for “too long, didn’t read”) – here we go:
It is sensible, rational and based on evidence to believe that:
You will live a long life, despite type 1 diabetes.
You can do almost anything despite type 1 diabetes (sorry to anyone hoping for a career in active military service!)
Complications like blindness, kidney disease and amputations are not an inevitability.
Type 1 can be made into a smaller part of your life, a less controlling part of your life, a less consuming part of your life.
But it’s still sensible to think that type 1 diabetes sucks. Because it does. Screw you type 1. Get back in the backseat of this car like I told you to!
Benjamin
“The Dia-boss”
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