There’s a pattern I keep noticing with the advocates I interview.
Almost none of them set out to become one.
Scott K. Johnson is a perfect example. He’s lived with type 1 diabetes since the age of five, back when it was still called juvenile diabetes, before we understood that this autoimmune condition can strike at any age. He didn’t grow up planning a career in advocacy. He just got to a point in his young adult years where he was wrestling with the emotional weight of living with a chronic illness, couldn’t find the resources he needed, and decided to start talking about it.
He started a blog. He found his people. And one thing led to another.
Sound familiar?
Advocacy as therapy
One of the things I love most about these conversations is the honesty. Scott didn’t frame his early blogging as impact work or community building or any of the language we now use around patient advocacy. He described it as something much simpler: he needed people like him.
Not the inspirational stories of professional athletes crushing it despite a diagnosis. He needed the everyday people, the ones struggling to take their kids for a walk without interruption, to mow the lawn without their blood sugar throwing everything off. The ordinary, relatable, I’m not doing this perfectly either kind of people.
And when he found them, something shifted. The things he thought were personal failures: struggling to accurately count carbohydrates, getting the insulin math wrong after all these years, turned out to be nearly universal experiences. That realization alone was healing.
I said it on the episode and I’ll say it here: I keep finding that for most of us, whatever form our advocacy takes, it starts as therapy. It started that way for me too.
You don’t have to do it all
Scott said something that I think every advocate, new and experienced, needs to hear:
You can’t do all of it. And that’s okay.
Advocacy isn’t one thing. There’s legislative work, research advocacy, awareness building, fundraising, peer support, storytelling. I write about four distinct buckets in From Patient to Advocate, and I’ll be honest, fundraising is one of them and it’s the one I barely touch. It just doesn’t fill my bucket the way legislative and research advocacy do.
Scott’s the same way. He’s never been one to obsess over website traffic or social media metrics. He measured impact the old-fashioned way: did something I said reach someone? Did they tell me? Did I run into them at a conference and see it in their face?
That’s enough. That has always been enough.
The hospital room phone call
I shared a story in this episode that I don’t tell often enough.
I was recovering from my liver transplant, three years ago now, in the transplant wing. The medical team had been very clear: no work for six months. And there I am on my cell phone, talking for half an hour with another colorectal cancer patient who was pursuing a liver transplant himself. Answering his questions. Connecting him with my transplant surgeon. Doing exactly what they told me not to do.
My nurse waited the whole time. She heard everything.
When I hung up, I looked at her and said: This is the best medicine I can have.
Happy to report that man received his transplant about a year ago and is doing well.
There is no metric for that. There is no dashboard that captures what that phone call meant to either of us. And Scott agreed — advocacy, at its best, becomes a self-feeding loop. You receive help, you heal, you give it back. Around and around it goes.
What Scott is working on now
Today, Scott channels most of his energy into Blue Circle Health, the nonprofit organization where he works. Blue Circle Health provides free care, education, and peer support to adults living with type 1 diabetes. The organization is currently available in 20 states and continuing to grow.
If resources were no object, Scott’s wish is straightforward: he wants every person living with diabetes to have access to the medicines and devices that already exist and are already proven to work. Not a cure, though progress is being made there too, just access. That’s it. The tools are there. The barrier is access.
It’s a quiet but urgent kind of advocacy. And it’s very much his lane.
You can find Scott’s blog — still up, still worth reading — at scottsdiabetes.com, and learn more about Blue Circle Health at bluecirclehealth.org.
And if this conversation resonated with you, whether you’re living with diabetes, supporting someone who is, or just figuring out what your own advocacy lane looks like, I’d love to hear from you.
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That’s the whole point, after all.
— Tim
