When it rains in Little Rock, Cora won't leave the back porch. She walks to the edge, looks at the rain, and turns right back around. 5.9 pounds of pure refusal, and nothing Neil does changes it. That feeling has a name. Diabetes distress comes in 7 flavors....
The episode, word for word
It rained in Little Rock this week, and anytime it rains, my dog will not leave the back porch. I open the door, Cora walks out, gets to the edge of the porch, looks at the rain, and turns right back around. Every time. 5.9 pounds of pure refusal.
And there's nothing I can do about it. I can't make that dog want to walk in the rain. I can stand there with the door open for 10 minutes and she'll just look at me like, you brought me out here, you fix it.
Hold onto that. I'm going somewhere with it.
I'm Neil Greathouse, this is Your Best T1D Year.
Monday I told you about 4 in 10 of us carrying diabetes distress, and today I want to show you what's inside that number, because "distress" is a bucket word. It's like saying your car has "trouble." Okay, but is it the brakes or did a raccoon get in there? Those are different problems.
Okay, here's the principle. This comes in 7 flavors. It's Baskin-Robbins, if Baskin-Robbins only sold flavors that ruin your afternoon. And the most common one by a mile is the one I feel on the porch. Nothing you do changes anything.
Here's the science. Same 2015 paper, Fisher and Polonsky. When they built the type 1 distress scale, they didn't ask "are you sad about diabetes." They interviewed a bunch of us and let the categories fall out. 7 came out, and I'm going to read them fast, so listen for yours.
Powerlessness. Your numbers do what they want no matter what you do.
Management distress. The daily grind, the 400 decisions.
Hypoglycemia distress. Fear of lows. In your sleep, while you're driving, at a kid's birthday party holding a juice box like it's a defibrillator.
Negative social perceptions. Being judged, being blamed, explaining for the 900th time that no, you didn't eat too much sugar as a kid.
Eating distress. Food as a math problem and a moral problem at the same time, every meal, forever.
Physician distress. Your care team doesn't get it or doesn't help.
Friend and family distress. The people who love you getting it wrong. "Can you have that?" Yes, Linda. I can have that.
Did one of those hit? For most of us, more than one. And the same team followed 224 adults for 9 months, and powerlessness was the most common one and the one that stuck around the longest. People shifted on the other 6. Powerlessness just sat there. It's the Thanos of the list. "I am inevitable." Yeah, buddy, we noticed.
And that feeling isn't laziness and it isn't weakness. It's what a brain does after 400 decisions a day with about a 60 percent hit rate. If you played a video game where you did everything right and the boss still beat you 40 percent of the time, you'd put the controller down too. Except you can't put this one down, so the frustration just moves in and gets a mailbox.
That scale, the full version, is 28 questions. Which is 27 more questions than any endocrinologist has ever asked me about how I'm doing. "How are you feeling?" "Fine." "Great, let's look at your A1C." That's the whole mental health screening. It's shorter than the Terms and Conditions nobody reads, and about as useful.
Quick side quest, because the internet mushes these together and Awareness Month is a good week to un-mush them. Diabetes distress is the weight of doing this. It's common, it's expected, it isn't a disorder, and it gets better with the right support, including other people who have it. Diabetes burnout is Polonsky's word for what happens when distress goes on long enough that you stop doing the tasks. Checked out, not just worn out. And depression is a clinical diagnosis with its own rules, and that one gets a professional, full stop. I'll hand you some in 2 weeks on the Clinicians list. 3 different things, and most of us have had at least 2.
Polonsky says something else I think about a lot. Distress does not track your A1C. You can have a 6.5 and feel like a complete failure. You can be terrified of lows with a flat line. Good numbers and misery are allowed to coexist, and if that's you, you're not broken. You're carrying a thing nobody measured.
So, back to the porch. I couldn't make Cora want to walk in the rain. But I could stand there with the door open. And eventually she went. Not because the rain stopped. I was just still standing there.
That's the whole month, you guys. We can't fix the weather, so we stand on the porch together.
Your one thing this week is the same. One real comment on one person's post, one sentence a human typed. Yesterday I gave you 8 places to do it. If you already did, do a second one, you overachiever. And if you're the mom or the husband or the roommate, comment as you.
The weekly check-in is on yourbestt1dyear.com if you want in.
You're not doing a bad job. You're doing a difficult job, against a boss that cheats, with a controller that's been in your hand since the Clinton administration.
Nobody remembers easy. My name is Neil. Friday, I hand you 2 questions and I want your answers. See you then.
This is the episode script as read on the mic. It's education and encouragement, not medical advice. Talk to your care team before changing anything about your management.
