Where Did Diabetes Distress Come From?
Diabetes distress affects 40% of adults with type 1 diabetes, but what exactly is it and where did the research come from? Neil explores the research, shares practical insights, and provides tools for managing the mental load of T1D. What...
The episode, word for word
I'm Neil Greathouse, I've been living with type 1 diabetes since 1992, and this is Your Best T1D Year.
We've made it to episode 99. Ninety-nine episodes of building habits, laughing at my own mistakes, and figuring out how to work on diabetes instead of just reacting to it. We've been at this for 33 weeks now, which is basically like a Netflix series that got renewed for way more seasons than anyone expected.
This month, we're diving into something heavier but really important: diabetes distress.
Let's just be real for a second.
Diabetes distress is not just "a bad mood" or being tired of logging numbers. It's the weight of:
Waking up already exhausted, before you've even touched a glucose meter.
Checking your pump or CGM for the tenth time in an hour, because you don't trust what your body's doing.
Wondering if this is the week insurance decides to fight you on refills.
Watching a stubborn high that laughs at every correction you throw at it.
Treating another low while you're just trying to function in front of your coworkers or your kids.
And it's not just the physical stuff. It's the mental juggling act of carrying all of that, while still doing your job, paying bills, being a parent, showing up for friends, or just trying to be a human.
I've felt it at different points in my 33 years with type 1. Sometimes it's subtle, like a quiet hum in the background of my day. And other times it's loud and crushing. If you've felt it too? You're not weak. You're not failing. You're experiencing what the majority of us with type 1 feel.
Now, here's the interesting part: researchers decided to measure this thing.
Back in the 1990s, they created something called the PAID scale, Problem Areas in Diabetes. Twenty questions about frustrations, burnout, and fear.
In the 2000s, they designed the Diabetes Distress Scale (DDS), which divided distress into categories like emotional burden, regimen burnout, doctor-patient stress, and family stress.
And because type 1 has its own unique set of challenges, researchers later created the T1-DDS, the Type 1 Diabetes Distress Scale, with 28 questions specific to our world. Eventually, they even made a shorter version, the T1-DDS-7, so you could get a quick snapshot of how heavy things feel.
These weren't gimmicks. This was behavioral science catching up to what we've lived every single day: diabetes can weigh on you in ways that are measurable, predictable, and worth paying attention to.
Here's why it's worth talking about:
Studies show that about 40% of adults with type 1 diabetes are living with moderate to high distress at any given time. That's almost half of us.
Distress makes everything harder: blood sugars are tougher to manage, A1Cs go up, energy goes down. Not because you don't care, but because exhaustion makes every decision heavier.
And here's an important note: diabetes distress is not depression. They overlap sometimes, but they're not the same. Which means the way we respond to distress has to be different too.
Naming it doesn't fix it, but it does give us a starting point.
So here's what we're doing this month: we're going to study this together. We're going to learn what the research says, and we're going to talk about it openly and honestly. These episodes are here to pull the curtain back, destigmatize some of what you might be feeling, and make sure you know: you are not the outlier. You're not the weird one. You're the majority.
In the next few episodes, I'll walk you through the actual questions from the T1-DDS-7 and the longer version too, so you can see how this is measured. But I don't want you to rush to take the test just yet. First, let's build the context together so when you do take it later this month, it actually means something.
And remember this: your worth isn't tied to a distress score, or an A1C, or a time-in-range percentage. Those numbers are conversation starters. That's it.
This episode is supported by Blue Circle Health, they help people with type 1 diabetes navigate the system, get real support, and stop feeling like they're fighting alone. Check them out at BlueCircleHealth.org.
This is Your Best T1D Year. New episodes drop every Monday, Wednesday, and Friday. And next time, episode 100, we're going to celebrate a big milestone together.
"If you want to actually take one of the diabetes distress quizzes, the short 7-question version or the full 28-question version, I've got them linked for you at yourbestt1dyear.com. You can also just hit the link in my bio and it'll take you right there. No hunting around, it's all in one place."
Type 1 diabetes is exhausting. But managing it every single day doesn't have to be. You're not doing a bad job, you're doing a difficult job. Nobody remembers easy. And I'm proud of how far you've come this year. I'm right here alongside you as we build these habits together.
100 - October 3
This is the script as read on the mic, lightly tidied for reading. Education, not medical advice. Talk to your care team before you change anything about your insulin.