A few months after Neil was diagnosed in 1992, his dad dragged him to a JDRF event. Neil was 20, arms crossed, doing the math on how fast they could leave. Somewhere in the middle of a keynote, his dad leaned over and whispered, "You can do this one day."...
The episode, word for word
A few months after I was diagnosed, my dad dragged me to a JDRF event. Panels. Researchers. People who'd had type 1 for decades, up on a stage, talking about it like it was normal.
I did not want to be there. I was 20, I'd just lost flight training to this disease, and I sat slouched in my chair with my arms crossed doing the math on how fast we could leave. Then somebody on stage said the line every one of us has heard. "We're 5 years away from a cure." They've been saying that since Jurassic Park was in theaters. The first one. I rolled my eyes so hard I think my dad heard it.
And somewhere in the middle of a keynote, he leaned over and whispered, "You can do this one day."
Do what? Sit in a room full of people who remind me of the thing that wrecked my life? No thanks.
That was 1992. It took me about 10 years to understand what he meant.
I'm Neil Greathouse, this is Your Best T1D Year.
So here's what those 10 years looked like, because I think a lot of you might be exactly where I was.
I hid it. Every injection in a bathroom. Every blood sugar check, I walked to another room. Full Mission: Impossible, except the vault was somebody's guest bathroom and the thing I was protecting was a syringe. I'd sit at a dinner table doing carb math in my head and nobody had any idea. A couple of friends knew the word, and none of them knew the disease, and I didn't teach them, because that would've meant admitting it was real.
I was embarrassed. I thought I did this to myself. Sheesh, Neil. C'mon.
Okay, here's the principle for this whole month. When you got diagnosed, somebody handed you insulin and a meter, and nobody handed you a person. Insulin, a meter, a pamphlet, and "good luck." It's the diabetes version of the McCallisters leaving for Paris. Everybody meant well. Nobody counted the kids. Nobody said "the most useful thing in your bag is going to be another human who has this." It's free, it doesn't need a prior authorization, and most of us went years without it.
Here's the science. 2015, Journal of Diabetes and Its Complications, a researcher named Larry Fisher working with Bill Polonsky, who's basically the godfather of this whole field. They built a scale just for adults with type 1 to measure diabetes distress. Not depression. Distress. The weight of doing this every day.
About 4 in 10 of us scored at least moderate. Look around your next endo waiting room. Every other person is carrying this and not saying anything, which is what a waiting room is anyway. Everybody sitting there, nobody talking, everybody pretending to read a Highlights magazine from the first Bush administration.
And in 2016 the American Diabetes Association said in writing that your care team should screen you for distress at diagnosis. Raise your hand if anybody asked you. Yeah. Me neither. I got a pamphlet with a cartoon pancreas on it. The cartoon pancreas was smiling. Mine had just quit without notice.
Here's what finally cracked it for me. The first type 1s I ever talked to were on blogs, and then YouTube. I'd leave a comment, then another one, and one day somebody commented back, which in 2005 internet terms was getting picked first in gym class. And it clicked. These people get it. I don't have to explain the math to them.
And in 2008 I made a video for my coworkers, because every time my pump beeped somebody asked "you can't eat that, right?" and I was tired of answering. That video is the reason you're hearing my voice right now.
So the 10 years of hiding and the thing that saved me were both a screen. I was alone behind one and talking through the other.
Here's November. For 8 weeks I handed you a habit. This month I'm giving you people. Tomorrow, the first of 5 Tuesdays, I'm posting a list called The Real Ones. People in this world I'd actually send you to. Nobody paid to be on it, and most of them find out tomorrow morning. Tomorrow is the Helpers, 8 people who answer DMs at 11pm. Then every Tuesday, more, until there are about 3 dozen of them on one page by December 1st.
Your one thing this week is the easiest ask I'll make all month. Leave one real comment on one person's post. Not a heart, not the fire emoji. A sentence. "I do the bathroom thing too." "You're doing a good job." If you love somebody with type 1, comment as the mom, the husband, the roommate. And if you don't follow a single other type 1... good. Tomorrow I'm handing you 8.
If you want to do this with me all month, head to yourbestt1dyear.com and sign up for the newsletter. There's a quick check-in every week and I'll read what you send me on the show.
One more thing. If I could sit down with 1992 Neil, arms crossed in that chair like a bouncer at a club nobody was trying to get into, here's what I'd tell him. Get over yourself. It's real. And you're about to get some of the best friends of your entire life through this exact thing, because they get it. Don't be afraid of being different, man. That's where your people are.
You were right, Dad.
You're not doing a bad job. You're doing a difficult job, in a bathroom, by yourself, for a lot longer than anybody should have had to.
We are the ones. The ones living with it, the ones loving somebody who has it, the caregivers, the kiddos doing their first injection in a school nurse's office right now. All of us.
My name is Neil. Wednesday, the 7 flavors this comes in, and which one's yours. 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.
