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Inspiration Exchange Diabetes Moments Episode 3: Power in Diversity of a Story with Scott K. Johnson, mySugr

Scott Johnson (mySugr) joins Cherise to discuss the things that led him to blog about diabetes and the need to have more voices in the online space and stories from those affected by type 2 diabetes. Scott said it best, your voice matters. There is so much power in the diversity of story that someone out there needs to hear your voice.

Show Notes

  • Writing and sharing personal experiences online
  • Pioneers of the diabetes online community
  • Diabetes meet-ups
  • Scott’s inspiration

If you have feedback, questions or comments about the podcast, please send them to inspiration_exchange.podcast@roche.com.

Intro/Outro Music

Road Trip by Joakim Karud. Music promoted by Audio Library.

Headshot of Scott K. Johnson from mySugr

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Show Transcript

Intro: Hello and welcome to Inspiration Exchange: Diabetes Moments podcast, a collection of inspirational stories brought to you by Roche Diabetes Care. I am your host, Cherise Shockley. And during this podcast, we will focus on stories of inspiration and peer support while on the go. So grab a cup of coffee and enjoy the show.

Cherise: Hi. Everyone, this is your host Cherise Shockley. And today I am happy to have my special guests Scott Johnson. How are you doing Scott?

Scott: Hey, Cherise. I'm great. How are you? Thanks for having me on.

Cherise: Oh, not a problem. I'm excited because we're going to take the deep dive and to get to know who you are. Also your connection to diabetes, but more importantly the diabetes online community and what inspired you to start blogging. So, before we get going, can you tell us a little bit about you and your diagnosis story?

Scott: Sure, Yep. As you mentioned in the introduction there, my name is Scott Johnson. I've lived with type 1 diabetes since I was five years old, way back in 1980. So, you're talking to (officially) GRANDPA Scott. I'm living a very full, how healthy and happy life with diabetes. It doesn't slow me down even though, and I don't enjoy it. I would give diabetes up in a heartbeat if given the opportunity, but I'm also thankful for all of the resilience, and stubborn determination diabetes has taught me, and all of the great friends and connections that diabetes has brought into my life. Such as you Cherise.

Cherise: Well, thank you. And it's funny because every time I hear you say how long you live with diabetes, I, cause you were diagnosed at what, 1981?

Scott: 1980.

Cherise: So your diabetes is actually a year older than me.

Scott: That's crazy.

Cherise: I know, right? It's kind of like I'm sitting here, and I'm like, I know I say this every time you say that, or every time I even see, you mentioned your diabetes anniversary online. I'm like, wow, his diabetes is truly is a year older than me. So that's crazy. You, your diabetes has been in the world or with you longer than I've been in the world. So, um, I know that's a little geeky, but hey, I just had to share that, and I want it to make you feel a little old if that's okay.

Scott: Yeah. Thank you. And I think it's, it's nice to reflect on, um, on the one hand all of the great positive changes that I've seen, um, and how far we've come, how much easier it is to manage my blood sugars then it was way back then. Uh, actually way back then, my parents were doing so much more of it. Um, on the other hand, I'm still often frustrated by the lack of progress we're even, uh, and this is going to sound really crude, but we're, we're still quite barbaric in many things, right? We're stabbing ourselves with sharp metal objects and bleeding on things to see if we estimated the amount of insulin right. And I think that that's often a good reminder of how much progress that is yet to be done and how much farther we need to come. So it gives me, I think, a good balanced perspective on, um, gratitude and yet had always pushing for more.

Cherise: Yeah. I, I was diagnosed in 2004 so I didn't have to go through a lot of the things that you or your parents had to go through because I came in right in time before, you know, CGM had just started up and, and all the new technology with insulin pumps and insulin pens and meters. So, when you actually think about the history, we've come a long way. And then if you think about also, so not only the history of diabetes care and technology, but the psycho social support and the peer support, um, has recently, even though we've been in the mist for a very long time, it is really starting to pick up waves in the, the healthcare provider community and also in the patient community. Yeah. Because I don't know if you realize this and maybe you can kind of share, how you got started, but every time I get online, right, it's like, oh my gosh, you know, this is, it's not getting old, but to us it is. But to everybody else that's fine in it, it's still new. So then you get that extra push to keep going and keep sharing. And the community continues to grow. So I'm just curious from the time that you started to now to present, what are some of the changes? And even before that, what was your motivation to even begin to share your story?

Scott: So, um, why I started sharing my story online was I basically needed a way to cope better with the thoughts and feelings and emotions of living with diabetes. And as I started to raise my own family and recognize and appreciate all the work my parents did for me, uh, as, as they were raising me with diabetes, uh, it, it just, it all I needed, I needed some better coping mechanisms for that emotional aspect and psychosocial aspect of, of living well with diabetes and, um, try to a handful of things and, and eventually found that, uh, blogging was a really, really useful and powerful way for me to do that. So there was something special for me about the exercise of writing something about kind of forcing these vague thoughts and feelings through, um, through words and sentences and, and blog posts that were very therapeutic and cathartic.

Scott: And, um, it was also a really kind of, um, kind of lucky timing. And in that, it was, uh, right when tools like Blogger and WordPress, uh, hit the scene. So it made it very easy for me to get those things out into the world and, um, start making connections with other people doing similar things. And so, um, I think, uh, I don't think I realized it at the time, but one of the most powerful things that, um, if connecting into this online peer support community did for me was, um, helped me develop a big sense of normalcy, right? What I mean by that is, uh, we go to our care providers and they, um, first of all, they're in a really tough position and I appreciate them tremendously, but they have only, you know, if you're lucky, a half hour or maybe 45 minutes to really troubleshoot your diabetes care.

Scott: And so by the nature of troubleshooting, you're looking at, uh, the trouble points and, and problem-solving, right? So you come out of those appointments with, um, with formulas and equations or you know, if you encountered this situation, do that and, and so forth. But you also come away with like, man, like we just looked at a lot of negative stuff. Uh, if you have talented providers, they, they will find special ways to, to also empower you and make you feel good. And I've been fortunate in that way too. But, um, out in the real world, I would apply all that learning, and you know, most of the time it would work. But then there are those times that it didn't work. I would do everything I was taught in and still have results that didn't match my expectations. And then you start to, to have this like weird, negative, uh, language in your mind. Like, boy, I mean, you know, I must be doing something wrong, or I'm broken or weird or whatever. And what peer support community did for me? The online space was, was help me see that. No, that's not the case at all. That's, that's the nature of diabetes is it's not always going to follow the rules. And that's very, very normal that, that most people with diabetes or are struggling with the same things I was. And so that helped me feel that helped me feel better.

Cherise: And I understand how that could make you feel better because you know, you, you're living in the world. You know where there's no one else around you who could comprehend or understand or understand what you're going through.

Scott: Yeah.

Cherise: But to have that place where this, that quiet moment where you're sitting down, and you're just not even talking, but you're, you're sharing through the computer, your thoughts, trans very transparent. Um, I was a huge fan of, of your writings early on. I actually thought you, um, received training, but well, because it's like if there's two things right, that I appreciate about you is one, you tell your story and you tell your story very well. Secondly, when I first started participating in the online community you use to comment on everybody's blog. I mean, who does that?

Scott: Well, thank you, Cherise. That's very, very kind of you to say those things and I appreciate it, you know, there was, uh, I don't know what to, how to, how to give credit to me, my writing. It just felt like very, very natural storytelling. And maybe there was just that, that's what's the therapeutic part of kind of processing these thoughts and feelings that are in my, my heart and head is that's the part that makes it feel so therapeutic is finding, finding ways to tell that story. I would get as much out of, reading everyone's stories and,

Scott: you know, it was important for me to share with them that I was getting value from them, sharing their, their experiences. And so, um, even if it was nothing more than just letting them know that I appreciated them being brave enough to share their story, that that was important for me. Um, it actually, you know, today and, and I think we'll get there later in the conversation. Today there's, there's so many conversations happening, which is a beautiful thing. Life has gotten much busier with work and family and a granddaughter and all these beautiful, amazing things that I can't, I can't keep up with everything that's happening in the, in the diabetes online space anymore. It makes me kind of sad, and I miss it. But, um, uh, it's, it's an amazing thing. I think that there's all that's out there and I wish I could, I wish I could comment more and keep up with it more. It's a great problem.

Cherise: They have a say. If you think about it, that's kind of like a really good problem to have. I mean, you went from a community of maybe five to 10 people pretty much, and you had Children with Diabetes website. But outside of that, there, there was nothing, right? Besides your Web MD, American Diabetes Association and JDRF. Now you think about 2019. Right? You have bloggers, you have YouTubers, there's Instagrammers, there's Twitters, there's Snapchat, there's, I mean there's Snapchatters that sounds funny by the way. We have all of these different places to connect with people affected by diabetes. Like that is, that's, that blows my mind even to this day. It's like, oh my gosh, there's all these places that you can find someone to connect with. But the main goal, right, is to get comfortable in that place and know that sometimes it's okay. It's, you're not, everybody's not going to be able to, to respond to every single thing, but knowing that you're sharing this space with other people. Yeah. The Internet makes the world small. The diabetes community is large in numbers, but it's very small online even though it was still like one of the top three online communities for people with medical conditions. But when you hear that, what's going through your mind?

Scott: Well, that's a really great question. Cherise and there are a few thoughts that I have. One, I'm thrilled that there are so many different ways for people to tell their stories and for, uh, on the other side of that for people to experience the power and support of peer connections in peer support, uh, and what's most important about that is that they can experience that their comfort level, right. So, um, uh, people can, can read blogs, they can watch videos, they can, you know, peruse and, and, and like scan Instagram stories and whatever, and it's all at their comfort level and they can decide how, how much they get involved. The other thought that I have is that at some level, everyone is standing on the shoulders of those who came before them. Right. So, um, and it's important for me to, to pay respects to, um, you know, the different communication channels that were, that were there before I started blogging and things like newsgroups and email lists, you know, you mentioned Children with Diabetes and the, and the forums and things like that. And it's, um, what we're seeing today is, um, is this beautiful natural evolution of technology and storytelling and people feeling more comfortable telling your stories. You know, there's really, there's no replacement for me if the power of, of in person connections, but what, what all these different channels, uh, do online and electronically is it bridges the gap that is in between when I can connect with other people, living with diabetes in person and also it, it helps me, when I maybe don't have the energy or I'm not feeling emotionally up to being together with people in person. Right. Because there are those times too. And, and again, that highlights the, um, the flexibility of being able to interact at my comfort level.

Cherise: Right. So I know when you, so right now I know that you, you live in San Diego, which I saw on Instagram that you are at a meetup and I was so jealous that first of all, now you're live, you live in San Diego when I used to live 45 minutes from San Diego when you lived in Minnesota. So I'm kind of jealous that, you know, not only is it you in California but there Scott and Jamie, so like that whole community and now you have the new generation of diabetes bloggers are Instagrammers and wherever platform that they are coming together to share and to congregate. And it, yeah, it was pretty amazing.

Scott: It was, it was super amazing. And I'm so thankful, a big shout out to Kayla who organized that event and it was really special to me. Uh, I left, uh, when moving to San Diego for work. So I left Minneapolis as you mentioned, it's, it's coming up on a year now. And in Minneapolis, I had a really strong and active, uh, local diabetes community that I would connect with in person as, as often as possible. And, moving to a new city, you know, move my family halfway across the country, and of course, weather and climate and atmosphere and everything is amazing. And I work with a bunch of amazing people, many of whom live with diabetes, uh, here at mySugr. But, I was missing that community of people with diabetes. And so, before long I got to, uh, connected online with a Facebook group that Kayla organized.

Um, and through that, she publishes local events. And so, um, she connected with local business, the Broken Yolk restaurant and, and organized like a private section of the restaurant that it wasn't big enough. They had to expand into different areas. And, and so many cool people came. Sha, Ali, David, um, I mean I can't even, I can't even like, am I missing so many people and I met so many new people and um, it really, it really helped me feel like I'm starting to find my feet again in the local area. And, and I'm so thankful and, and I know that, um, something that, that I think goes, um, unmentioned a lot is that doing those types of things, all the work that Kayla does, it's much more work than what people recognize. And, and so, um, Kayla, I don't know if you're if you're listening, but thank you for all that you do. And, um, it's appreciated everything that all the work that goes on behind the scenes.

Cherise: We're going back up a little bit. So you started blogging. What was the process and how long did it take? So that's question one. And then the second one is what advice would you give to someone who either they want to start blogging or they want to find an online community, whether it's on Instagram, Facebook, or Twitter or whatever platform they choose, what advice would you give to someone who's reaching out?

Scott: Yeah, great questions again. So you know today it doesn't take long to start to get your story out on whatever platform you choose. Back then I had made a couple of attempts at getting my story out even before the tools like Blogger and Wordpress made it so easy. I had some technical knowledge and, actually was writing webpages and HTML and it was just, it was so cumbersome that I didn't keep up with it. But once Wordpress and Blogger came out, it was so easy. It was much like just opening up Microsoft Word or, a document editor that I could just type whatever I wanted and, and hit the button. And there it was on the Internet for anyone, unfortunate enough to read the first stories, or could find.

And you know, I don't even know if, if I took find or reach back and see what those first posts were. I think like many technology things, I've transitioned a handful of times to different platforms or, or website addresses. I don't know if I could even track back to what those first few posts were, but I imagine it was something simple. Like, you know, hey, I have diabetes and, and here's part of my story and, more to come. So it can be really as simple as whatever, like whatever you want it to be. And my advice for anyone thinking about doing it, I think what I hear most often from people with it, that question is like, why, why should I do it? There's so many stories out there. What value do I have? And my response to that is that your voice matters. That, there's, there's so much power in the diversity of story that someone out there needs to your voice because, uh, because my voice doesn't, doesn't resonate with them, but yours might. And there are, there are people out there who need to hear your voice where you will fit their needs. And, it's also like the more, the more voices and stories out there, the better. One of the favorite things that I think about when I think about all that we, the big collective we in, in the, the peer community space online are doing is that, um, think about 20 years ago when you would search on the search engines for information about diabetes, you would find likely, um, very medical information, information, uh, just not, powerful empowering stories about life with diabetes. And think about today, if you search on information for diabetes and now you're finding all of that still exists, but you're also finding all of our stories about, about living well with diabetes or, um, or encountering challenges and how we, how we deal with them, how we overcome or how we, you know, we get knocked off the horse but, but find different ways to get back on the horse and um, and, and those different, those different perspectives there are so, so important. So the power of stories is huge.

Cherise: So where do you see the diabetes community online community in two years if there was only Twitter, Facebook, Instagram, Snapchat, those platforms. And let's just add, say podcasting, right? Because I think there's a lot of stories that's being shared through podcasting, right? Where do you see this small but mighty community in the next two years?

Scott: Well, I definitely see more voices and more inspiring stories and people sharing their stories. I see. Um, it's kind of funny to think about because I see an almost invisible ripple effect coming out of all of this because it, it's impossible to know just how far your story is, is reaching or who it may be helping or impacting. I also see these incredibly creative people finding new ways to use those, those channels and tools that you mentioned it's a beautiful thing because the community creates what the community needs and diabetes. Uh, it, our needs evolve as our lives change. And so, um, they will, we will find ways to make them, the channels serve us in whatever ways that we need. But, it continues to come back to, uh, to stories and, and finding, finding new perspectives to, um, to help us see unique ways to, to overcome them, the different things that diabetes throws at us so that we can continue to live happy, healthy, powerful lives. Speaking on that just quickly, I'm so inspired by people living with diabetes because diabetes is not the only thing that we do. We do all these cool sayings, uh, and take care of our diabetes. Like, which is a people that have said it so many times before, but it's more than a full-time job all by itself. So, and on top of that there, you know, working, parenting, having your careers and, and hobbies and you know, and then you think about all the cool creators out there doing all that cool stuff on top of that even more. So I just have so much respect for everything happening in this space.

Cherise: So what is missing from the online community? Online community? If you can name one thing? We're making a really small one thing off the top off the top of your head.

Scott: Just more and more stories. More people, more diversity and diversity, both culturally and um age and, uh, different types of diabetes. You know, Cherise, you and I have talked a lot about, um, the type two stories, right? So there's the online diabetes space is disproportionately represented by those of us with type 1 diabetes. And that's not the story of diabetes in the world. Uh, and so we don't know. We don't know why that is I'd love to learn more about people with type 2 diabetes or other types of diabetes. So I, and that just kind of comes back to more, more stories, more people, more experiences.

Cherise: I love that. So you kind of answer the last question that I'll always was that I like to ask and that's what inspires you. So I'm going to change it just a little bit because I know you're a huge basketball fan, so we're going to leave diabetes for like two seconds. Who will be going to the NBA championship and who's going to win?

Scott: Oh my gosh, Cherise. I can't answer that. Yeah.

Cherise: Oh, this is what happens when you kind of jumped like, it's this awesome. You're like, how did he know it was going to ask that? Like, I am so inspired. I'm like, whoa. There goes the last question. So throwing you a little curve ball, right. This is, this is awesomeness of being a podcast. So once again, who do you think is going to go to the NBA finals? And who do you think will bring it home?

Scott: So I, I'm going to throw another curve ball right back at you and throw out an impossible answer it because I still am a die-hard Minnesota Timberwolves fan. And, and I grew up just, uh, in love with Kevin Garnett, even though he would curse his butt off on live television. Um, and, and I'm, I'm having fun watching highlights of, of cat and, um, I love, I love when Andrew Wiggins will, you know, catch some fire and dunk on folks. Um, so even though I know that the Timberwolves are not going to make the playoffs or take it home, I'm going to stick with my Minnesota Timberwolves, so I'm going to stay and show some hometown love.

Cherise: That's spoken like a true fan. That's how I feel about the Raiders. I'm from Kansas City. I should be a Chiefs fan. I should be on the Mahomes bandwagon. But I'm not, I'm a Raiders, fan, win, lose, whatever. I just love the Raiders. I do not know why. I just do. I totally get it.

Scott: Yup. See, yeah, see. Yeah, that's so funny. What a great, what a great way to wrap it up. Thank you for the opportunity.

Cherise: And thank you so much for your time. I really appreciate taking time, you taking time out from your busy schedule to spend time with myself and our listeners.

Scott: My pleasure, Cherise. Thank you for having me on. It's an honor to be a guest on the show.

Cherise: Not a problem. And we'll love to have you back in the next couple of years, and hopefully, everything's still going on. And I think one thing that I like to address too before we go is you mentioned something about bringing more diversity, whether it's culture, age, people with different disabilities that have diabetes. That's what the hope is with this podcast is to find people out there that have and can bring different, unique thoughts and skills or living with diabetes to the table. So that's something I'm going to challenge myself to do this podcast continues and as I continue to build upon the guest list.

Scott: I love that and let me know how I can support that. And if you a potential guest, if you're out there listening, I have so much to learn from you, so please don't hesitate to accept Cherise's invitation.

Outro: Thank you for listening to the Inspiration Exchange: Diabetes Moments. If you have questions or comments, feel free to send me an email or a tweet using hashtag #diabetesmoments.

 

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