Interview: Scott K. Johnson, Writer, Advocate, Type 1 Diabetic

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Scott Johnson was first diagnosed with type 1 diabetes back in 1980 at the tender age of 5-years-old. At the time, he processed it as a young mind would, in the service the simple desire “to get back to playing with my G.I. Joe & Hot Wheels.”

In 2004, Scott picked up the pen (or the keyboard in this case) and started blogging about his life at ScottsDiabetes.com . He has, until this day, remained an unwavering and incredibly refreshing voice on the topic of diabetes.

Along with being an active writer, Scott is also a patient advocate, working with people across the healthcare spectrum to help them establish effective communication with the patient community.

He is also the Communications Lead in the U.S. for mySugr and Patient Pathways Lead in the Diabetes Division of Delta Project Management.

Everyday Diabetes recently had the pleasure of catching up with Scott at his home in Minneapolis, Minnesota.


Photo: Manuel Gruber/Stereochrome
Photo: Manuel Gruber/Stereochrome

When you were diagnosed with type 1 back in 1980, what was your reaction and how did you respond in the months to follow?

I was only five years old when diagnosed, so I honestly don’t remember much about it. I like to think that there was this beautifully ignorant resilience – where I just did the mechanics of diabetes in order to get back to playing with my G.I. Joe & Hot Wheels. I’m sure it wasn’t that easy, of course. And the majority of the burden of care rests on parents and caregivers. 

You’ve been blogging about about diabetes since 2004. How do you stay inspired to keep at it?

This question makes me smile because life with diabetes never fails to present interesting stories to share! Whether they are funny, ironic situations I find myself in, or inspiring people doing wonderful things while living with diabetes.

And if I see another news story about “suffering” from diabetes… I’m not suffering. Yes, it takes work, and yes, it sometimes sucks. But I’m living well with diabetes, thank you.

For example, one of my dear friends with diabetes near Minneapolis is allergic to insulin! Technically I think it’s one of the preservatives or additives included, but nevertheless, what a situation she’s in! Yet, she’s one of the most upbeat, positive people I know, and her sense of humor is amazing. 

What are some assumptions that non diabetics make about people with diabetes that drive diabetics crazy?

Great question!

One assumption is that diabetes is simple. That we just take our shots and we’re fine, or we follow a certain diet and that’s all there is to it. The reality is that diabetes is immensely complex, is different for all of us, and is often inconsistent (so I can repeat the same routine behaviors yet experience different results).

Read More: Jill Knapp on Overcoming Life’s Adversity – Including Losing over 100 Pounds

Diabetes requires a lot of mental energy, which is sometimes exhausting. Most of us make it look much easier than it is because we don’t want pity or people treating us special or different. 

And if I see another news story about “suffering” from diabetes… I’m not suffering. Yes, it takes work, and yes, it sometimes sucks. But I’m living well with diabetes, thank you. 

Having been an astute observer of the situation for all these years, and considering that, despite increased awareness, type 2 continues to increase, do you see any light at the end of the tunnel?

Yes, I think so. It feels like people around the world are starting to realize that little decisions make big differences. Additionally, the medical community continues to make slow and steady progress in treatment options and they’re gaining better understanding about diabetes in general. However, the more we learn about diabetes, the more complicated the puzzle gets. And in the big picture, my decade on the scene is a relatively short period of time.

You recently had the chance to meet with Minnesota Senator Al Franken about Juvenile Diabetes Research Foundation. Can you talk a little bit about the work that JDRF does and how people can help?

JDRF is the leading global organization funding type 1 diabetes (T1D) research. They work to reduce the impact of T1D from people’s lives until a world without T1D can be achieved (through better treatment, prevention, and eventually a cure). JDRF collaborates with a wide spectrum of partners to advance scientific research and regulatory influence.

Diabetes requires a lot of mental energy, which is sometimes exhausting. Most of us make it look much easier than it is because we don’t want pity or people treating us special or different.  

The meeting with Senator Franken was part of the wonderful JDRF Advocacy group who empowers local grassroots efforts to build and sustain critical support for T1D research funded by the U.S. Federal Government by raising awareness among Members of Congress of the financial, medical and emotional costs of the disease.

As people living with diabetes, it’s easy to forget that the general public (including our representatives) does’t understand what diabetes is all about and how much work we do to stay healthy. We need our representatives to remember our stories every time something to do with diabetes lands on their desk. 

JDRF has a great website (jdrf.org) with a section dedicated to getting involved, and that’s the first place I’d go when looking for ways to contribute, whether that be financially or by finding opportunities to volunteer. 


If you’ve never taken a spin through the deep archives of Scott’s blog, then you really should. Now. Go. scottsdiabetes.com

Follow Scott on Twitter: @ScottKJohnson

Photos by Mandy Dwyer/Glimpses of Soul Photography and Manuel Gruber/Stereochrome

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