Back when Instagram videos were only 15 seconds long, Neil made quick, chaotic type 1 clips: a 4-part series on too many sugar-free gummy bears, and a game of football with a loaf of bread, cradled like a newborn. The comments that came back weren't jokes....
The episode, word for word
When Instagram first came out, the videos were 15 seconds long. That's it. 15 seconds. And I jumped in and started making these quick, dumb, chaotic clips about type 1. A 4-part series on what happens when you eat too many sugar-free gummy bears. Me playing football with a loaf of bread, cradling it like a newborn because I missed carbs that much.
And the comments that came back caught me off guard, because they weren't jokes. They were real. People saying "I've never seen anybody talk about this." People who had finally found their people. So I replied to every single one. Every one.
I'm Neil Greathouse, this is Your Best T1D Year.
Monday I said Awareness Month is a lighthouse for one boat. Today I want to show you what that looks like online, because there's real research now, from this year, about what happens when we're loud.
Okay, here's the principle. You don't post about type 1 to inform the public. You post so the next person who gets diagnosed searches a hashtag at 2am and finds a human instead of a pamphlet.
Here's the science, and it's from 2025. JMIR Diabetes, a team out of Joslin and Children's Hospital of Philadelphia. They sat down with 26 young adults with type 1, ages 18 to 25, and asked them what diabetes social media does to them. 3 things came out.
Every one of them was on social media daily. Most only looked at diabetes stuff sometimes. And most of them never posted about it. So the waiting room, everybody watching and nobody talking, is in a journal now.
The ones who saw other type 1s posting felt less alone. One guy, 24, said it in one sentence. "It's not just you. Somebody else is having that same problem." That's the whole mechanism. Company.
And some of them felt more alone watching it. A 21-year-old woman said, and I'm quoting, "I was kind of jealous, actually, because I myself don't have a lot of friends with diabetes." She's watching people have a community she doesn't have. She's outside the window looking in at the party, and the only reason she's still outside is that nobody inside has said "hey, come in." Your post is for her.
One more from that study. The thing those young adults hated most was being told what to do. One of them said, "any time someone tells me what to do and not ask." Which is also why Yoda talks in riddles. Nobody takes advice from the guy who just tells you. So when you post, you're not a coach and you're not a PSA. You're a person saying "this is what today looked like." That's what works. It's what I try to do here, and when I slip into clipboard mode, you guys let me know. You should.
One caveat. The room is real, and some of what gets said in it is wrong. A 2025 study graded diabetes information on TikTok, and let's just say the grade is not getting into college. Great personality, though. Lots of extracurriculars. So be the person who shares what happened to you, not the person who tells a stranger what to do with their insulin. Your story is always true. Your advice might not be. Next Tuesday I'm handing you 8 clinicians who are allowed to give advice. Leave that lane to them.
So how do you tell your story in one sentence, since I keep asking you to. 3 parts. What happened. What it cost. What you'd say to yourself then. It's the Inigo Montoya rule. "Hello. My name is Inigo Montoya. You killed my father. Prepare to die." Who he is, what happened, what it cost, what he's doing about it. 4 sentences, and the man was busy. Mine is "diagnosed at 20 in flight training, lost the career and hid for 10 years, and I'd tell that kid to get over himself." Nobody needs your A1C or your medical history. They need the one thing that proves you're real.
The ask this week stays the same. One DM, 7 words. "Saw your post. I get it. That's all." And one true thing in a story if you've got it in you. Caregivers, same from your chair.
And Friday I'm in Akron. I'm giving a talk at a children's hospital on World Diabetes Day to a room full of kids and parents and the people who take care of them, and Friday's episode is going to be that talk in 5 minutes, so you hear it the same weekend they do.
Poll's still open till Sunday at yourbestt1dyear.com.
You're not doing a bad job. You're doing a difficult job, and somebody outside the window is watching you do it, hoping you'll say come in.
Nobody remembers easy. My name is Neil. Friday, Akron, and the thing I wish somebody had told me at 20. 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.
