Inspiration Exchange Diabetes Moments Episode 2: Evolution of the Diabetes Online Community with Kerri Sparling, Six Until Me
Cherise is joined by Kerri Sparling (Six Until Me) to discuss the evolution of the diabetes online community and her motivation to start a blog about diabetes over 15 years ago. Kerri said it best, people with diabetes are everywhere, and there is more than enough space for others to participate, lurk or share their story. It's always one story that can change somebody's life.
- Evolution of the diabetes online community
- People with diabetes are everywhere
- Pros and cons of the diabetes online community
- The need for type 2 diabetes storytellers
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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 Cherise Shockley, your host and I am joined today with Kerri Sparling who has been a long time blogger and longtime diabetes advocate amongst other things. Hi Kerri, and welcome to the show.
Kerri: Hi Cherise, thanks for having me.
Cherise: You are very welcome. So before we get started, just kind of want to let everybody know what we're going to talk about today, where you are going to learn about your involvement in the diabetes community and also the evolution of the community. So before we get started, can you tell us a little bit about yourself?
Kerri: Sure. And I love that we're going to talk about the evolution of the community and kind of a shorter podcast. So I'm like, okay, how much do we cram in? So, uh, my name is Kerri Sparling. I live in Rhode Island, and I'm very proud to live here. I think everyone should come and visit. And when I come back in my next life, I'm definitely coming back as an ambassador for the Travel Council for Rhode Island. I'm a big fan, but that's not diabetes related. So I'll go back to the diabetes stuff. And I was diagnosed with type one diabetes when I was seven years old as I started second grade. So I've had type one for 32 years, and in the last 14 or 15 years, I've been involved in the diabetes online community because in 2005 that's when I decided to stop living kind of quietly with my diabetes and to start looking for other people who were living with it. And I wanted to find people who are living lives that I could identify with, you know, like people who are looking for new jobs and going out on dates. And I just like doing life stuff and I couldn't find a lot of the basic life stuff online. And that's what drove me to start my blog. And here we go like almost a decade and a half later still at it.
Cherise: Wow, that's, that's a very long time. I remember actually coming across your blog through many different channels, but when I found it I was like, oh my gosh, she gets it right. Back then there was a lot of information out there, but there wasn't a lot of information about people living with diabetes. I think back then it was only maybe like nine of you out there, whether it was Children with Diabetes or whether it was Scott Johnson and Ninjabetic, George Simmons. So it's very interesting to see how far the community has come.
Kerri: It's amazing. And that what you said is totally true. Like way back in that era when you would put diabetes into Google, you would get a lot of medical sites. Like you get the Mayo Clinic, or you get Cleveland Clinic or a lot of information and facts, but you didn't a lot of anecdotal people living with diabetes. So you never saw diabetes in the context of somebody's life. You decide in this weird structured, medically reviewed vacuum. And I was like, well, I don't live in a medically reviewed vacuum where the people who are doing stuff the best they can, but still like having hiccups and all those sorts of issues along the way, like who were the people that we're integrating diabetes into real life? That's totally what I was looking for. And I'm glad you mentioned Scott because he was my first find I, he was the first blog that I stumbled across and it was like, yes, this is what I'm looking for, and I wanted to be part of it. So that's what kind of drew me into it.
Cherise: Oh, that totally makes sense. That totally makes sense. So we're going to back up a little bit because I'm curious to know before you actually started participating in the line when you was a kid or teenager, did you participate any, any local events, any diabetes camps?
Kerri: Oh, totally. So like I said, I was diagnosed when I was seven, and upon my diagnosis, diabetes was something that my family knew nothing about. But conveniently someone related through, a friend of a friend had a son with diabetes. And so my mom connected with that mom and then the two of them and their children would drive to the Joslin clinic up in Boston for our endocrinology appointments. So I was really glad to hear that my mom right at the outset had somebody that she could connect with that was also raising a child with diabetes, and that gave her that sense of community. And I knew this other kid and we kind of sort of grew up together and we had a sense of community. But my first real taste of like people like us in a group setting sort of thing was diabetes camp. So I went to the Clara Barton Camp up in Boston. I end up in Massachusetts. You've heard of it, right? Yeah.
Cherise: Yes I have. I have enough great stories about it. I'm like, Gosh, I wish I had something like that when I was diagnosed at 23.
Kerri: Well that's kind of the thing like I feel like diabetes camp back then was a thing. There were very few of them, but the one that I went to was one of the first, and it was tremendous. Like every camper had diabetes, every counselor had diabetes, all the staff members had diabetes. So to take an injection before a meal or without your meter and prick your finger, that was normal. And to have that feel normal in that setting made the moments at home when I was kind of the only person with diabetes, it made that feel less isolating because I knew at least somewhere there was a group of people who knew what I was going through. And that did a lot for me, my emotional health. But I feel like the Internet and the diabetes online community has helped kind of create like a digital diabetes camp for people who were diagnosed.
Kerri: You said you were 23?
Kerri: So like I'm hoping the Internet became like your diabetes camps so you might not have slept in a bunk with everybody and shoot up before breakfast, you know? But like it was one of those things where you could find your people, and you could network with your peers and get that sense of like, oh, I'm not the only one. And that just makes you, I need, I mean for me that makes me feel less like this is something that's so hard and at least something that I can wrap my head around knowing I'm not the only one doing it. You feel the same way?
Cherise: Oh yeah, I definitely agree. So I think for me, right, it was the blogs, right? So I found Kerri's blog. I found Scott's and George's, and after I found you all there was to diabetes and I got really involved with TuDiabetes and then it was like, oh gosh, how can I give back to the community? That's given me so much. Right. Whether it's a pat on the back, just say woohoo, good job. Or, Hey, you just ran a 5k race, or hey, you know what, we're here for you. And that an A1c is truly a number and it doesn't define who you are. So I think that for me when we talk about blogs, that right there was kind of like the Whoa, these people get it. And then when I found Twitter and I got on Twitter, and I'm seeing your interaction with Scott's interaction and George interaction going live, to me that really put the icing on the cake.
Kerri: I can't wait to listen to this podcast cause there is this weird like glittery sheen that came over the word Twitter when you said you, you're like me. And then I found Twitter, and there's this nice pause of reverence for Twitter. So, but that, and you say that. So like I really liked writing a blog because that was where I felt the most comfortable sharing my voice. But I love that there is a medium and a way for people to communicate regardless of how you like to do it, whether it's, you know, kind of, um, free range and live on Twitter, which seems to be your preference or the long form narrative writing, which is my preference on blogs. And then you have people on Instagram who prefer to show photographs. It's like there is a way for everybody to tell their story and I love that kind of delving into, um, what you had mentioned earlier about the evolution of the online community. I love that there are so many different ways for people to share their story because there's truly something for everybody.
Cherise: Well, I definitely grew. So you started blogging, Kerri, 15 years ago. So what's changed?
Kerri: Yes, since 2005.
Cherise: It's changed since you started blogging.
Kerri: Oh Man. I mean, well, like personally I started blogging before I was married before I had children before I felt kind of rooted in my adult life. And so it's really been weird for me to go back and look at my first few years of blogging and say, Oh yeah, that's right. That was when you were feeling out your relationship with your now husband. That's when you were getting engaged. That was when you were planning your wedding. So it's strange to look at it like an online timeline of my actual life so that its own odd thing. But I'm coming to like the kind of looking at the diabetes community as a, as a whole. I've, I think that blogging is becoming less enticing for people to start because it does take a huge level of commitment. You have to be willing to say a fair amount and be narratively strong with it and be grammatically strong with it and check for typos and all that sort of stuff. And also you have to be willing to put all of that narrative out on the Internet versus a lot of the different ways of sharing now tend to be smaller snippets. And I wonder if it feels less exposed because it's in a broader timeline with other people. Does that make sense?
Cherise: Yes it makes sense, but then I a part of me, I get it right. For me, I think that with blogging, there's still a place for it. But what I do like about Instagram and Twitter, that blogging doesn't, it's kind of like that in between, right. So you sit at a computer, you, you share all your information about diabetes in your life, just in general. And then to me, like I said, the icing on the cake is the Instagram and Twitter. Oh Gosh. I said the Instagram, Instagram, and Twitter. So it's kinda like that interactive storytelling because I can go on, I can, after I read your blog, I can go on, and I'm going to sound a little stalkerish. So please do not look at me differently after I share this with you, but I can read your story. I can see your story on Instagram through pictures, but I can follow your story live on Instagram. That's, that's very powerful, right? Because everyone doesn't understand and I think people don't truly understand the power of the Internet and the connection that it, that it brings or anything. So it to me it, it's just, it's one I like all three together, and I know some people don't like all three together. Me Personally, I just don't have time to sit and blog and watch my grammar and watch where you know, where all the big words go, where all the periods go or semicolons, like the grammar police right now is just in my head.
Kerri: I love punctuation.
Cherise: For me I prefer Twitter, but I also see the need for Instagram. But which kind of brings me to the next question, I'm thinking about something and I want to get your, your perspective. Knowing what you know now about social media and the diabetes online community would have started blogging in this day and age 2019 do you think you would have shared as much as you shared about your life?
Kerri: You know, I think that's a really fair question. In hindsight being what it is, I would be comfortable sharing what I've shared about my life. I still have reservations about decisions that I've made about sharing details about my children's life and, that is, that's the line in the sand for me. I can tell my own story, but when I feel like I'm talking on behalf of my kids are saying too much about my children, that's I don't have regret so much as I have reservations. And so I've always been careful about keeping my kids names offline and kind of judicious, do judicious about the photos that I put up of them and that sort of thing. And just to make them, make sure that their story remains theirs instead of me kind of collecting it and making it mine. But in terms of what I shared most of what people think, I will, I assume sometimes that people think that because they read someone's blog that they have a really good sense just who that person is on the whole. And it's like not all the way because if you're writing a diabetes-specific blog, they're not getting the nuances of my relationship with my mother and my father or the stuff I like to do with my friends or that sort of stuff. Like it's very diabetes centric. And so I feel like I've had this really good opportunity to tell a lot of personal diabetes details while also retaining privacy and security around the other parts of my life that are not as comfortable having online. And if I did it, if I started doing this stuff now versus 15 years ago, I think I'd still hold to that same once it's published. It's forever public sort of mentality and be a little careful about the things that I, that I shared, keep it kind of diabetes.
Cherise: That totally makes sense. So, um, which kind of brings me to the next question. So you mentioned you know, the relationship with your family. Um, you actually wrote a book. Can you tell us a little bit about that book?
Kerri: I feel weird telling people about the book mostly mainly because of the title. So the title of the book is balancing diabetes and I feel like when people look at the title, they're like, oh cool. She figured out how to balance diabetes. She's got all the answers. And I'm like, oh no, I don't know. That's like the one caveat I want to bake into that. But um, I, so I did write a book called balancing diabetes. The title was given to me by the publisher. The publisher asked me to write the book. They very kind and very generous and asking you to do that and it gave me the opportunity to tell kind of like a blog version of what life the diabetes is like only through a book for him because it instead of giving all these medical facts and figures and that sort of thing, it allowed me and people within the diabetes community who were generous with their story through me to say this is what this stuff looks like implemented. This is what it looks like to wear an insulin pump in the wild. This is what it looks like to use a CGM in the wild. This is what a low blood sugar it feels like at the airport. This is what it's like to try to carb count on the fly at some random restaurant like people talking about those real life things are what are included in that book and it's very important to me to tell those stories because that's what diabetes is. Again, it's not in a vacuum. We're doing this stuff out in the real world and the more we tell those stories about how we're getting it done, the more that people who need to hear those stories to figure it out for themselves or you know kind of blaze their own path and are armed with information to at least take that first step. And I love that. So that's why I'll, I'll be always proud of the book and just a little scary.
Cherise: I've read it. What I enjoyed about it is something that you touched on is it's not a there, there are snippets about your story and your life growing up and I really enjoyed hearing from your brother, which is pretty cool. But at the same time you once again in Kerri's fashion, you bring the community together. You allow them to come in and provide small snippets about, like you said, traveling with diabetes, um, babies and diabetes. I mean, you name it, it's in that book. So I appreciate that because sometimes when you open up that they, these books, it's about diabetes. And when I see a book about diabetes, I want it to be about stories. But I could be like totally the only person that feels that way. But um, I just want to make sure, I'm clear I might be the only person who feels that way.
Kerri: No, I'm raising my hand.
Cherise: We're going to give back to the diabetes online community. Where do you see the diabetes community in the next 4-5 years?
Kerri: Oh my gosh. I don't know. I hope that's a fair answer because I didn't, so when I started in 2005 I had no idea what 2010 would look like and how many of us there would be and how many search returns that would be. So empowering and inspirational would come back when you put diabetes into Google after only five years. Right? So, and now we look 15 years later, 14 years later, there's even more. And so four or five years from now, I mean, my brain can't accept the fact that there's going to be even more people, more stories, less loneliness, less isolation, more empowerment for people. I always felt that with the community that more is better. It's always one story can change somebody's life. It doesn't have to change a thousand lives. It just has to change one, even if the story is only changing the life of the person who's telling it, it's just a matter of kind of getting it off their chest or whatever else. But there's so much power baked into just one small story, one voice that that is what I hope will continue to drive the community to grow and do it.
Cherise: Totally agree. I think, um, what would be awesome is, is to actually see more people with type 2 to join the conversation, right? Whether it's through Instagram or blogging or vlogging, um, Twitter, whatever. Because I think that's a side that we typically don't see. Even though you know, whether it's someone who has type 2 on insulin without, I think that story is missing from, from the community in itself. And I'm starting to see more and more people with type 2 starting to join in and contribute to the conversation as well.
Kerri: And I'm so glad you said that and I mean you and I have known each other for a long time and I feel like we've had this conversation several times over about people with type 2 raising their voices. And I really hope that that starts to happen more and more because I feel I've always feared that it's the stigma of type 2 that keeps people from feeling comfortable saying, oh, but I have type 2 diabetes saying that part out loud. And our role I hope as people with type 1 is to help draw them out and encourage them to tell their stories and help reduce that stigma and show one another that we are stronger as a broader community and to kind of raise everybody's voices as a, as a group, that the whole stigma thing, I just want to peel that back and get rid of it because nobody should feel ashamed for having diabetes of any kind. And especially because feeling ashamed might keep someone from seeking help or treatment or community or something. Like they might not seek things that could improve their health because they feel embarrassed or ashamed. And I can't think of the worst reason to not be seeking assistance. You know what you mean?
Cherise: Peer support is always, it's always the way to go. I mean, I, I mean to make that sound like I was Will Smith or anything but at the same time, so
Kerri: I'm here for it.
Cherise: I mean, sometimes we don't know what we need until we find it and it when we find it because I lived with diabetes for so long by myself. And then when I found the community, when I found you, when I found Scott and George and everybody else, it was like, whoa, it was amazing. And now to see more people come in and tell their story, you know, is, it's amazing. And I want everybody to feel it even if they don't participate in it, but to lurk in it, to, to find it that it's for when they are ready to jump in and join the fun and conversate and communicate. I think it's amazing.
Kerri: And I love the word lurk because it's, it used to sound weird like you would say, oh, the lurkers or people working on blogs and I, it sounded a bit seedy and treacherous and low. My goodness, those lurkers. But I wrote to really love that word because there is nothing wrong with being in read-only mode. There's nothing wrong with being in view only mode. If you get what you need just by reading or hearing someone tell their story. It doesn't mean you have to tell your story too in order to become part of the community. Just receiving that information and enjoying that information and connecting with someone's story, that in and of itself won't be enough. You know, there's no pressure to do more than what you feel comfortable doing.
Cherise: So we've talked about a lot of good things, right about the community. We talked about connections. Oh boy. But you know, you being the real person that you are and myself were real. So let's be real. What are some of the cons? What are some of the things, and this is from your perspective, right? What are some of the things that that could possibly turn people away but also bring it back to, to why the pros outweigh the cons and why that is?
Kerri: I feel like we're supposed to have like a sort of theme music that comes in before the sorts of questions. So you're, so we've talked a lot about the pros, so you're looking for some cons of being a diabetes storyteller?
Cherise: But we know that it's sometimes it's not about unicorns. You've been in it for 15 years and I've been in it for about 10 or 11. So I'm not to scare anybody away, but just to know that you, and I think it's more so to let people know that what you see may not be what we described all the time, but you have to look for the positive moments. And I think sometimes we always see all the negative moments, but we need to learn how to scroll past those negative moments.
Kerri: Sure. Well, I mean we're, we're kind of talking about something that isn't limited to diabetes. So the Internet in general, it seems like it's a, it's on some weird story arc of darkness, uh, at times and things can get very, um, people get very defensive and very angry and they lash out sometimes online and that is not limited to the diabetes community. So that said, if you're sharing your story in the diabetes community, you are also by telling your story, opening yourself up to people's opinions and their critiques and you have to decide what you are comfortable having people's opinions on. You know what I mean? So that, that comes back to that statement of once it's published, it is forever ever public. So before you tell your story, and this is advice for people who had done this for a long time or people who are thinking about doing this or people who are wondering why people do this. You have to think this is going to be a known thing. I'm going to put this on the Internet. People will say things about it. Am I comfortable with people commenting on this? And for me, I always made it, um, like I said, kept my kids names offline and that sorta stuff. But I always tried hard not to write about arguments that I would have like with my mother online because of course I'm having arguments with my mom, especially as a kid about diabetes or as an adult about whatever she and I battle at times and I don't want to document those things for people to pick apart because that's not fair to my mother or to me. Same for my husband. He and I have arguments just like any married couple does and we have issues just like any married couple does, but I don't put those on display because that is not, I feel the right thing for me to do for, for my family. So there is a level of privacy that you have every right to maintain. Even if you decide you want to share your diabetes story. So in terms of a con, I think just knowing what you want to share and being comfortable with those parameters and setting them for yourself is a good way to kind of jump in with your eyes open.
Cherise: That's a reasonable, I mean it kind of set the stage for a few, you know, if you want to do this, then just be very understand what you're getting into before you get into it and only feel comfortable putting out there, which you know people, there's a possibility that someone, one person, right, there's always one person that might come and try to come at you, but at the same time you have to be the bigger person and walk away from it.
Kerri: Well I was also gonna say that because you've decided to share your story, you or me or whoever else, it also doesn't obligate you to continue to share your story. So if you decide that you are done and you're not getting joy from this anymore or it's not something that you want to do or it's something that you've decided that you have regrets about or your family has asked you not to do or your job or the has asked you not to do or whatever the circumstance you're not obligated to do this. Diabetes is the thing that we have to manage. Telling our stories is not something that we are obligated to do. It's not part of, of the list of things to do when it comes to living with diabetes. Checking your blood sugar. Yes. Maintaining your medication levels. Yes. All that sort of stuff. That's definitely on the to-do list. Talking about diabetes. Yeah. It's, it's a choice, not a, not a forced issue. So if you're, if you want to do it and you get something out of it, that's great, but there is no obligation. It goes back to like the lurkers too. It's like it's okay if that's your thing.
Cherise: It's okay to follow, it's okay to like, to heart something on Instagram. But I think the thing is right is you have a choice and just because there are hundreds of people out there that's willing to share, does it mean you have to share? So, um, so that's very good because I think sometimes some people feel pressured. How can people find the diabetes online community?
Kerri: Oh my gosh. I feel like it's everywhere now, which is amazing. So I go back to the standards of where do I want to be taking in my information in the first place, where's the medium that I want to ingest from kind of thing. And then I would just put diabetes into that search mechanism and see what pops up. So if you are the type of person who wants to read blogs, go onto Google, put diabetes blogs and see what pops back at you and sparks your interest. If you're looking at Instagram and you're like where are my diabetes people at? Put it into the search bar or chuck in a hashtag or two and see what pops back at you. I just, I would encourage people who are looking for their community to kind of find where they already are taking in digital resources and see if diabetes people are there already and I can guarantee you that they were absolutely everywhere. Like it is so creepy to me that I can't go to an airport or a grocery store or anywhere and not see at least evidence that one of us has been there. Whether it's a test strip on the floor of the gym that I go to, or seeing someone's like insulin pump tubing at the airport or hearing someone at a restaurant next to me casually say, oh, well my blood sugar. It's like we are, it would dude were everywhere. And they find that to be so comforting and so empowering. The in real life were there too.
Cherise: I could be going down street or mall and I hear beeps in my husband and daughter. They look at me. They're like, is that true? I'm like, no. And just to know that if somebody else, even though I do not know who that is, it's still me laugh inside because we're there. We're everywhere.
Cherise: That's right. Oh, Cherise. It gets even worse though, because if you, if you come to Rhode Island, you guys can come over and you will notice that my dishwasher and my refrigerator door, if you leave it open too long, make the exact same sound as my insulin pump when it's alarming or is my CGM when it's alarming. So the dishwashers, like sounding the noise that it's done, cleaning the dishes and I'm like, oh my God, it low and it's this weird. So even the beeps that aren't ours,
Cherise: What inspires you? It could be your family or it can be waking up in the morning. It could be, you know, the small things. Right. What inspires you? Not even just in life. It can be at this moment. What inspires you?
Kerri: Well, I, they're kind of two things that jump out the first, uh, would be my, my kids. And so I have a two-year-old and an eight and a half year old. And what fuels me too, kind of tried to do everything the best that I can is them as specifically related to diabetes. Because you know those mornings where you just don't feel like pricking your finger or you don't feel like even finding out what your number is or you're just exhausted by the whole process and you have to kind of get yourself together and say, okay, now I'm just going to keep doing it because I know it's the right thing to do. My kids are the fuel for me to continue to try because in a perfect world I will be around for a very, very long time so that I can bother them for a very, very long time.
I want to nag them. Like I want them to be deep into their 50s and I'm calling them every morning going, did you brush your teeth? Like I want to harass them for the rest of their lives. And the only way I'm going to be able to do that is if I continue to take good care of myself. So that would definitely be the first thing that inspires me. My two kids, I love them. They make me crazy. I love them so much though. But, um, and then the thing I think is the, as I get older I realized I have this new found appreciation for doing stuff that kind of freaks me out a little bit, whether it's maybe I'm traveling to somewhere that I'm afraid of or kind of standing my ground, uh, with a colleague in a way that I'm a little nervous to do. Or talking about something that I feel like is going to be kind of an uncomfortable conversation, but making efforts to embrace the awkward and do things that scare me a little bit, I feel like is really serving me well because it's making me step out these step outside of these comfort zones that have kind of built for myself and do experience that are new and different.
And like I said, as I continued to have birthdays and get older and older, I'm looking back at the things that I was afraid to do when I was younger. And I'm like, man, what was I scared of? Was diabetes that held me back. Was it my own insecurities? Was it just a lack of empowerment or knowledge, whatever it was. And tried to shake a lot of that off as I go forward because I've had so much fun in the last couple of years doing crap that scares me that I find it really exciting and I want to continue to do that and kind of going part and parcel with what I said about my kids. I would like to be able to take my kids along on these trips in these journeys and these experiences to help show them that they can also do things that scare them to be a little less scared and to live kind of a bigger, fuller life that makes them feel like they are unlimited by whatever it might be. The thing that they perceive is holding them back. So those, those two things are like my big inspiration.
Cherise: This actually beautiful. The older I get, I become sappy. You're becoming more adventurous though, I hope it changes.
Kerri: No, but I'll cry while I'm adventuring. I'll be like, oh, at the top of this mountain. It's so beautiful. I mean for lack of emotion.
Cherise: Thank you so much for, for coming on the show.
Outro: Thank you for listening to the Inspiration Exchange Diabetes Moments podcast. If you have questions or comments, feel free to send me an email or a tweet using hashtag diabetes moment.