Title

Personal Stories

Scott K. Johnson on Diabetes Resilience, Technology, and Finding His Voice in the T1D Community

With over 40 years of experience living with type 1 diabetes, writer and advocate Scott K. Johnson has learned a great deal about the healing power of storytelling. He’s also seen much improvement with technological advancements and how we communicate, express, and look at the disease.

Scott K. Johnson on Diabetes Resilience, Technology, and Finding His Voice in the T1D Community

We’ve heard it before—the narratives we tell ourselves are significant, but even more so, are the ones we impart to others. While sharing truths helps us to realize we’re not alone, personal stories can impact the world around us and have the potential to change lives.

Revealing our hardships deepens human connection by inspiring, challenging and building trust in others.

About Scott K. Johnson

In 1980, Johnson was diagnosed at the age of five with type 1 diabetes (T1D). Johnson doesn’t remember too much about his diagnosis other than that he became very ill and was hospitalized. Fortunately, his mother, a nurse, knew something was wrong and got him in quickly. “At that age, it’s mostly on your parents,” Johnson said. “They were deeply involved in diabetes education, as were my grandparents, who also received diabetes care training.”

With no T1D family history, Johnson’s family, as with most caregivers, had to learn the intricate nuances of diabetes in a considerably short amount of time. Even with the tremendous support system, Johnson said growing up with T1D was difficult at times, and the technology was nothing like it is today.

Johnson spent his first 40 years living in Minneapolis, Minnesota, and when a work opportunity relocated him near San Diego, California, it was an easy yes for his family.

Early in his career, Johnson learned the dynamic power of sharing his life experiences and lessons with the diabetes community. The blogger, speaker and activist has worked with stakeholders in the diabetes and healthcare space to establish active communication within the patient community. Today, his expertise in the diabetes social media space is renowned.

T1D Strong had the chance to discuss Johnson's career path and learn how his writing expanded from a few personal entries to an award-winning blog.

Advocate and Blogger

In the mid-nineties, Johnson was among the first people to write openly about diabetes. In late 2004, he started blogging and found an audience in the diabetes online community (DOC). He found it cathartic to share his insights. “In many ways, I think it helped me build resilience around my diabetes.”

“I was selfish, really,” said Johnson. “I was in my twenties; we had just started a family, and I was wrestling with all the emotions. I started writing as a helpful exercise to put my thoughts and feelings into words. It was really therapeutic and just dumb luck, it happened at a time when tools like Blogger  and WordPress hit the scene. By publishing my information, I slowly connected to others doing the same thing.”

Johnson said with blogging, he found two things extremely beneficial:

  1. “It’s easy in diabetes to wrestle with perfection. You have your clinical appointments, learn how things are supposed to work and then go out in the real world. They sometimes work, but not all the time. When it doesn’t, you wonder, am I broken? All these negative self-thoughts start floating through your head. I found that connecting with other T1Ds, it was normal to have these thoughts—it was all part of the package.”
  2. “Another thing that happened was I started gaining different perspectives on how other people were solving the same problems, giving me lots of ideas to try and different ways of thinking about things.”

Scott’s Diabetes

On Johnson’s website, Scott’s Diabetes, he shares his day-to-day experiences living with T1D and is transparent with his diabetes logbook app and his understanding of new technologies. He interviews experts and other T1Ds sharing their stories on the diabetes platform. Johnson shares videos with psychologists, doctors, and scientists in the T1D field, as well as offering information on safe driving for T1D teens and deconstructing the diabetes stigma.

Before doing anything, T1Ds must measure insulin on board and prepare for low blood sugar levels. In a candid voice, Johnson describes his T1D experiences and articulates the daily challenges diabetes brings to virtually everything he does: driving to work, mowing the lawn, or walking around the block. Johnson also points out that diabetes can be hard and isolating, so for him, the best outlet was to share his struggles alongside his successes.

Diabetes Online Community

The diabetes online community offers a world of information, resources and support. What started as a small group has grown proportionately to the number of people living with T1D and type 2 diabetes (T2D). Johnson said, “The support and encouragement I find there are immeasurable and play a crucial role in my self-care.”

Around the same time his blog took off, Johnson started working in the diabetes industry for an insulin pump company that is no longer on the market. From there, he became involved in a small startup company based in Europe called mySugr. It started as a smartphone application and evolved into coaching with more full services for T1Ds. Johnson worked in the communications area for ten years, but a company reorganization forced several layoffs, which affected Johnson.

Blue Circle Health

Today, Johnson works for another diabetes-related healthcare company, Blue Circle Health (BCH). Johnson serves as the Senior Community Manager overseeing marketing, public relations and video content. BCH is a unique care provider and philanthropically funded nonprofit that helps people with diabetes. The company staffs endocrinologists, insurance navigators, diabetes educators, peer support, social workers, counselors, and more to round out diabetes care and empower people to live healthier, more fulfilling lives.

Once enrolled, the program typically lasts between three to six months, depending on what each person needs. They stay connected to the BCH family and can re-enroll if needed. Blue Circle Health serves a broad population of people with diabetes and is currently available in Florida (and expanding soon). The program is designed to supplement and fill in gaps in their existing care - like a helping hand for people with T1D. Blue Circle works closely to keep primary care physicians (PCP) or existing endocrinologists in the loop. Johnson said, “The program is designed to help individuals any way it can.”  

Diabetes Social Media

Throughout his busy career, Johnson found time to stay involved with the diabetes social media and industry space. As he built his network in the DOC, he was able to connect with a multitude of healthcare providers.

“It’s always nice when industry and health care systems look to include the patient’s voice in decisions they’re making or products they’re developing,” Johnson said. “Unfortunately, that still doesn’t happen often enough.”

Johnson went on to say, “Through my writing, I was able to create some of those connections, which led to opportunities to join things like social media summits where maybe a company would host and bring together a group of people with similar writing backgrounds. Much of the stuff I do on YouTube is also born from many of those connections. I’m just looking to shine a light on the good things happening in the world and help people and myself with some of the things we’re struggling with.”

Diabetes Emotional Health

Along with the physical care diabetes demands comes a fair amount of strife and emotional baggage. Diabetes burnout and depression are real and not discussed often enough.

“One of the projects I’ve been having a lot of fun with lately is doing a series of videos with doctors Bill Polonsky and Susan Guzman from the Behavioral Diabetes Institute. They are world-renowned experts in the emotional health space of diabetes,” Johnson said. “Psychologists that not only see patients but are also involved in a lot of important research.”

There’s no question that stress and our emotions affect diabetes, and there’s still room for improvement. Whether in therapy or quality of life, we still have a long way to go. “We do the best we can, but there are times when diabetes is just going to knock you on your rear, and that’s part of living with it.”

“I love the work Jane Dickinson is doing out of the Colorado area and the great work coming out of Australia on the language we use around diabetes. We need to move away from phrases like ‘control,’ we can manage our diabetes, but there are times we just can’t control it no matter how hard you try.” 

People Who Help Others with Diabetes

“I have such a soft spot in my heart for people who help other people with diabetes keep their heads on straight because that’s just such an important part of living with diabetes,” said Johnson. So, in doing that project with BDI, Dr. Polonsky and Dr. Guzman often have research that they want to talk a little more about and share some of their thoughts, and I simply help facilitate those videos.”

What the Future Holds

Late last year, Johnson attended the DiabetesMine Innovation Days in Southern California, where he gained much appreciation and insight from some of the top minds in the diabetes community.

“We had the privilege of listening to Dean Kamen speak. He’s an entrepreneur who invented the first wearable insulin pump, and he’s been involved in all kinds of different things, from medical devices to the Segway to fountain soda machines. What I appreciated about his talk was that he said it’s one thing to have a good idea, but it’s a whole other thing to mass produce those good ideas at scale and keep them affordable, reliable, and consistent. I think that’s a part that is often overlooked.”

“We’ve seen this in the diabetes space, where we’ve had great products on the market but they just haven’t survived because there’s so much more than the idea. You need good business sense, and also part luck. We need more than good ideas.”

iLet Bionic Pancreas

Speaking of new ideas and wearable devices, Johnson is among the first users to try out the new iLet Bionic insulin pump paired with the Dexcom G7 continuous glucose monitor (CGM).

“So far, it’s good. It’s an interesting approach to diabetes management that takes some getting used to,” Johnson said. “There aren’t many controls or numbers or ways that you can interact with the insulin delivery system; it’s basically when you start up, it asks you for your weight, and you enter your weight and then off it goes – with the algorithm calculations.”

Johnson said that even bolusing for meals looks different. For example, when Johnson eats, all he needs to do is tell his iLet, ‘This is a breakfast, lunch or dinner.’  “It’s about the same as the usual amount of food for me.” He’s been on it for six months and overall feels it’s been a good experience, though he admits to having a few more lows. “I feel it’s giving me a little more insulin than my previous system, but I’m working through it.”

Diabetes Technology Advances

“I’m very thankful for all the technology we have: loop systems, iLet or sensors, and I take advantage of all of it,” said Johnson. “I do appreciate the technology – most of these algorithmic pump systems. They’re looking at as many variables as possible and making little adjustments every five minutes or so.”

“Even on my best days, I would never be able to think about my diabetes that often—nor do as good a job as many of these systems do. So I think we’re heading into a new stage where we can offload some of the work we used to do in our brains into computers and devices.”

“I have good and bad days, and there’s only so much that the technology can do, and it leaves a lot to be desired. There are always going to be problems with technology (failing sensors or pump site bleeders). Like consumer tech, such as apps like Google Maps or iPhones, we’re leveraging all of the technology we can. Health care is always a little behind that, but I love that it’s making progress,” Johnson said. “We’re just scratching the surface with a lot of what these systems can do.”

T1D Challenges

As well as advances in the medication stage, Johnson said he uses medication like GLP-1s, and he takes an SGLT-2. “I’m hitting my diabetes from all angles, and overall, things are pretty good. If I had to pick something I struggle with, it’s my diet.”

“The other challenge for many of us, if not most of us, is dealing with the costs and the access, jumping through all the hoops with insurance. It’s always a pain in the neck. Even if you’re in a good place with your insurance coverage, you know that could change, and it’s always a looming concern.”

Advice for the Newly Diagnosed

“I think one of my favorite mantras with diabetes, and with everything in life, is to keep focus on progress, not perfection. “It’s important to keep learning new ways to do things. Keep pushing and recognize that slow is fast. Don’t be afraid to ask for help with diabetes."

“One quick example about myself is that I’m terrible at reviewing my own diabetes data; it’s overwhelming, and I often can’t make sense of it. I’m too close, so I need a coach or educator – a clinician skilled at interpreting that data and talking with me about adjustments or behavior changes. And that doesn’t mean I’m doing a bad job; it just means I need help. And I think it’s similar to professional athletes, who have many coaches for various things.”

The Hummingbird Effect

One of Johnson’s favorite pastimes is capturing hummingbirds on video outside his office window. “When we started doing remote work, I had a window, and my wife said we should put some feeders out there. Then, we started live streaming. It’s a nice way for people worldwide to get some southern California sunshine and hummingbirds in their life.”   

If you look closely, there are many parallels between diabetes and hummingbirds. Hummingbirds burn energy constantly to maintain their fast lifestyles; they can fly backward and adapt to different environments. Also, the hummingbird effect describes how a single event can lead to unexpected outcomes. It’s similar to how the connectivity of the diabetes online community has the power to lift others and impact the world around us. 

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