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How to have constructive conversations with high-level officials

December 22, 2018 by Scott Johnson

First, I’m broadcasting from our new Vienna office! You’ll get to see a little bit of that.

Our guest this week is Quinn Nystrom, a diabetes advocate, speaker, and author that I’ve been wanting to speak with for a long time. We’ll talk about her political activities in the diabetes space, her interviews with Nick Jonas and the Surgeon General (really!). And we’ll also talk about her work on the intersection between eating disorders and diabetes. We’ll also share some of the resources she used in overcoming her struggles.

Apologies in advance for my audio quality, I was in the Vienna airport. But don’t worry, you can hear Quinn loud and clear. I also had a technical issue with my microphone for about 90 seconds right before the interview starts, so hang in there (or fast forward that part (2:01 -> 3:30)). We’ll get captions uploaded ASAP to help with everything. Thanks for your patience!

The video is below and the transcript just below that for those who prefer to read it. Thanks again for tuning in. There will be a special Christmas episode next week, so stay tuned for that!

Summary

  • See our swank new offices in Vienna and our COO’s alternate job
  • Intro to Quinn Nystrom and her work
  • How she got to educate the Surgeon General about diabetes by being polite on Twitter
  • Her dream interview with Nick Jonas and the work he’s doing to help people with diabetes
  • Her struggles with disordered eating and diabetes, how she overcame them, and why it’s so important that we talk to people with diabetes about eating disorders.

Video

Resources

Quinn Nystrom’s Blog
Center for Change

Transcript

Scott Johnson: Welcome to another episode of Live with Scott. Thanks so much for tuning in. I am broadcasting live from mySugr’s Vienna office today. I’ll share some pictures and talk a little more about that in just a second. My name is Scott Johnson. I’ve been living with type one diabetes since I was five years old and the diabetes social media space, that’s you, by the way, has been a big part of my well-being for a long time. In other words, you are as important to me as the ice in my Diet Coke. Very important. I’m so thankful for you. Speaking of that, did you know that ice is not very popular over here, for example, when I ask for a Diet Coke with extra ice, I might get three cubes instead of two. I know it’s a little bit different, but it’s all good.mySugr Bundle - Unlimited Accu-Chek Guide test strips

Scott Johnson: As your host today, I am happy to introduce you to Quinn Nystrom. Quinn is an amazing diabetes advocate, speaker, and author from my home state of Minnesota. We have so much to share. I can’t wait to get started, but first, last week’s winners. Congratulations to Cynthia Zuber and Phyllis Kaplan who just wants some fun, mySugr swag. We’ll send you a message on Facebook after the show to coordinate details. Stick with us to learn how you can also win some free mySugr swag too. As we get going, please share a quick hello in the comments and let me know where you’re watching from. That also lets me know that our audio and video is working for you and if we cover anything that resonates with you, please show us some love and if you know anyone that might find this helpful, please share this with them as well. Today’s episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more. All for just $49 every month. Learn more at mySugr.com/Facebooklive.

Scott Johnson: Now. Why am I in Vienna? You may not know, but mySugr was actually founded in Vienna Austria back in 2012 I joined the team when the services entered America in 2013 and since then, the company has grown a lot. There are now over 100 people in the Vienna office, and every year many of us from the US office come to Vienna to do a bunch of meetings and join the annual holiday celebration. It’s always a treat to see the beautiful sites around the city It’s very festive with many Christmas markets and decorations everywhere. The company holiday party is always fun, and did you know mySugr has its own band? Made up entirely of developers and other members of the mySugr team, “Megadev” rocks out every chance they get. It’s so much fun to see these hard-working people rock so hard. I hope you enjoy this little taste of the fun …and our Leadership and Biz Dev teams all wore ridiculous holiday suits. Our COO, you’ll see this in a minute, even lived a past life as a DJ and we convinced him to come out of retirement for us. So here’s a quick sneak peek of DJ Tony.

Scott Johnson: All right, how’s that? Now, for the past 22 years when Nystrom has been sharing her story of living with type one diabetes to audiences across the country, speaking to over 300,000 people. She’s a published author of the book, “If I Kiss You, Will I Get Diabetes?” Really, and is a regular blogger for ontrackdiabetes.com. As a professional speaker, she also travels across North America to diabetes camps, convention halls, corporate offices, the United States Congress, and yes, even the White House. Her company Qspeak allows her to speak right, consult and raise funds for diabetes. Nystrom has been featured nationally on XM Radio, Glamour magazine, MSN, Diabetes Forecast, Reader’s Digest, and TLC. She’s currently the National Diabetes Ambassador for Center for Change, speaking out about the high prevalence of people with type one diabetes and an eating disorder, and we’ll learn more about that in today’s interview. She received her Bachelor’s of Arts degree from Hope College and her Master’s of Science degree in Communication Management from Syracuse University, and I’m really excited to share our conversation today. Let’s get into that now.

Scott Johnson: Hey Quinn, great to see you again. Thanks so much for joining us.

Quinn Nystrom: Hi Scott. I’m so happy to see you again.

Scott Johnson: Likewise. So for those that don’t know much about you and your amazing story, can you tell everyone a little bit about your connection to diabetes?

Quinn Nystrom: So my connection started actually when my younger brother, Will, was diagnosed with type one diabetes when he was five years old. I was 10 at the time. This was back in 1996. Uh, at 10 years old I decided to devote my life really to helping find a cure for diabetes and help improve his life with diabetes. I never knew that two and a half years later I would be diagnosed also with type one diabetes at the age of 13. That certainly came as a shock to me. Um, I wish I would’ve taken that diagnosis a little bit better, but I think as a 13-year-old girl, you know, it was a pretty difficult diagnosis for me because, one, I wasn’t expecting it, I sort of thought of it as Will’s disease, right, that he was diagnosed with. And two, I think as a 13-year-old girl, you really just want to fit in, you want to blend in.

Quinn Nystrom: And so at 13 I was absolutely devastated. I was in denial. I was very angry about the diagnosis, and so I sort of had this angry phase for about a year after the diagnosis, but after my mother forced me to go to a diabetes camp about four hours from our hometown in Minnesota called Camp Needlepoint, an Aba camp in Wisconsin, it’s really what saved my life because I met other young girls my age who had diabetes and that’s really what turned it around for me and recommitted my life to doing whatever I could to help with the cause.

Scott Johnson: Yeah, just being 13 is a hard age for 13 year olds in general, but I imagine as a young, a young girl growing up and having, as you mentioned, identified diabetes so much with your brother and, and then all of a sudden, now it’s in your lap and you have to deal with it. I can, I can only imagine it was a bit of a moment for you. It’s so cool to hear that about Camp Needlepoint, that it played such a big role in your journey with diabetes. That’s great.

Quinn Nystrom: Yeah, I think as a 13-year-old girl, you just want to blend in and I think my priorities as a 13-year-old girl were guys, grades, and guys. And so I think trying to wedge this chronic incurable illness in was seemingly an impossible feat for me at first. And so I think getting the opportunity to meet other young girls who had sort of conquered that feat, you know, for several years and had moved on, sort of in a sense, right, with their regular lives was really impactful for me. Um, and showed that I could do it too if they had.

Scott Johnson: And you have been very, very busy over the past decade or so. When I originally asked you, what’s your, what’s your mission, what’s your message, and you said something that really was really powerful to me. I’m going to read it almost exactly as you as you wrote it, if that’s all right. So you said that you want people to understand how to redefine defeat in one’s life and to have hope and purpose again. It sounds very much like that’s what happened with you at that age and you were able to transform this into something that’s driving you and moving you forward, not only with moving you forward but turning this journey into something that’s empowering and helping find purpose in many other people’s lives. I admire that so much. So thank you for that.

Quinn Nystrom: Of course, you know, I think with, sort of this, you know, most people that I talked to who’ve been diagnosed with diabetes type one or type two or even, you know, girlfriends of mine who have been diagnosed with gestational diabetes, it is a devastating defeat to get that news. It is a shocking piece of news that they’ve gotten. And it’s typically not something people wanted, right? It’s not something that they say, great, this is what I was hoping for. And so usually people are very shocked by it and they’re upset that they were, sort of, those were the cards that were handed to them. And so I think there’s a lot of feelings of resentment and anger. And so my hope by telling my story, my brother’s story, in a very honest, vulnerable way, right? Because there’ve been a lot of diabetes stories that I’ve heard, probably Scott, that you’ve heard, you know, because I got diabetes, I’ve been able to do this, this and this, you know, these things that I will never achieve in my life, but I want to tell this very honest story of things certainly that I’ve been able to accomplish, but the tough times too, to write this full picture of what it’s been like to have diabetes and hope that people then they can see that certainly getting diabetes felt very defeating, but how they can redefine that in their life and see some of the life lessons that they’ve been able to learn from that diagnosis and really realize that, okay, maybe they didn’t get the choice to get diagnosed with diabetes, but they certainly get the choice of how they’re going to react to getting that diagnosis.

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Quinn Nystrom: And in my opinion, that’s the epiphany in their life. That’s that light bulb moment or as Oprah would say, that Aha moment. Right? And that’s what really changes people’s lives. That’s what changes their quality of life because you can certainly live your life with diabetes and be bitter and complain. I mean, you can certainly do that and hey, I agree with you. There’s a lot of days with diabetes that utterly suck. We can all agree to that, right? I will agree with you on that, but your life is going to suffer because of that, and so my message is how can you turn that around so that you can have the most fulfilling life possible?

Scott Johnson: I love it. It’s also teaching people, you know, if they can do that around the big things around their diabetes they can also do that around the little challenges that come up over the course of living with diabetes. One of the things that I find so inspiring about the work that you’re doing now is you’ve been able to take that message to scale. When you talk about scale, one thing that comes to mind is the conversation with the Surgeon General, let’s talk about that a little bit. Can you, I know this story, but I would love for you to sort of set the stage for those watching who may not know this story.

Quinn Nystrom: So it’s very interesting and what I would tell anybody is, you know, I’m just a normal Joe Schmo from this small town in Minnesota. I’m not a huge social media person. I’m certainly on it, but I don’t have millions of followers, and back in June of this year as some people know, the US Surgeon General who is appointed by the President of the United States who is deemed the top doctor in the country. That sort of his job, you know, to direct policy, to direct the president. He tweeted out, he was quoting himself from the American Medical Association conference, he was trying to shine a light on the opioid crisis, but in doing so he shamed people with diabetes and said something and I won’t quote it directly, but saying something like, um, would we not help diabetics who caused their diagnosis because they ate too much fast food, right?

Scott Johnson: One of those very stereotypical lines that we hear all the time that really feeds into the whole like guilt and shame stigmas that are so common and perpetuate those.

Quinn Nystrom: That’s so common. It’s so… It’s just so ignorant and you’re like, oh my gosh, he did not just say that? And so, of course, I sat on Twitter because all the people, the, the DOC started just like, you know, going back to this guy. And so, my take always as the diabetes advocate has been, you know, I understand there are people who are ignorant. I also understand I would hope that he would not be ignorant, but for whatever reason he said it. Um, I was going to take a lighter approach. And so I just said, um, you know, some something like, you know, I would hope that you would apologize and understand that your comments, um, because he used the Hashtag like #breakthestigma on this tweet. And so I just said, I hope you realize that you’re actually further stigmatizing people with diabetes. If you want to actually hear from somebody who is stigmatized with diabetes, I’d love to talk to you anytime, anywhere.

Quinn Nystrom: Shockingly to me. I went to dinner, came back, I got back from dinner. He has personally tweeted at me publicly saying, I am so sorry. I never meant to offend anybody. But he, out of the thousands people messaged him. He only messaged me on Twitter saying, I’m so sorry, Quinn Nystrom. So I’m like, this is so bizarre. So I just wrote back and said, my offer still stands if you want to meet just name the time and the place thinking like, no way is the Surgeon General ever going to take me up on this offer. Right. Like every two weeks later I get an inbox direct message from his chief of staff, from their account saying the Surgeon General has requested your time to speak with you. Um, he like to take you up on your offer. And I was just flabbergasted, Scott, because, you know, I just thought it was kind of a PR thing, you know, that he was apologizing and you know, talking to the Ada.

Quinn Nystrom: Um, but I have to say, I mean, we set up a call because he was traveling all about and he was very genuine to me. And a lot of people don’t know this because I didn’t post about this a week before, so we had a lovely, lovely conversation on the phone and he actually has family members who have diabetes. And I do believe it was just a bad, you know… I just think he wrote it before he thought it through it learned, you’d think he’d learn to think it through before it’s tweeted, you know, I think if more Americans, especially higher up, thought that we’d all be a little better off. Um, but he actually, you know, so, you know, I just thought, okay, maybe, you know, that was very lovely. He called me, whatever. Well, the week before Thanksgiving, he called my phone and left me this long voicemail saying he wanted me to know that he’s not forgotten about me, that he still elevating my story about people with diabetes and insulin affordability. And he hopes that we can work together on projects in the future. I mean, like a long five-minute voicemail. And when I asked him on the phone, why did you specifically take up my offer? Right? Because I was just so shocked.

Scott Johnson: Yeah.

Quinn Nystrom: He said there were many people who were, you know, rude or sort of saying obscenities about me. You said you were very respectful and calling me out. And he said, I felt like you would have a constructive conversation with me.

Scott Johnson: I think that’s something that clearly evident to me in that exchange back and forth that, you know when we’re working to move an issue forward or solve a problem like there has to be a constructive dialogue. So diabetes is a very emotional thing. We get our hearts and emotions tied up in it naturally. But, um, sometimes we just need to be able to have those constructive conversations in order to move things forward. I thought you did a very, very good job of that. It’s clear. It’s clear why the conversation happened, thank you for taking the time to do that. How cool is it to be sitting there having a conversation with the Surgeon General? Amazing!

Quinn Nystrom: It was pretty cool.

Scott Johnson: You know, we have another, um, another former Surgeon General in our ranks. Dr. Ken Moritsugu is on the board of directors for Children with Diabetes! Small world, in many, many different ways. Right. So you mentioned that the Surgeon General brought up the insulin affordability topic. I’d love to hear about some of the work that you’re doing in that area.

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Quinn Nystrom: It’s such a passion area for me as I think it is for a lot of diabetes advocates, simply because it is such a pain point for us every time we simply go to the pharmacy, uh, because we have to to keep ourselves alive, uh, especially for people with type one diabetes who are so dependent on the drug. And so for me as a self-employed single female who’s 32, who depends on the Affordable Care Act, I’m on the ACA plan. I pay a lot of money out of pocket for my health insurance. I pay a lot of money for insulin. Um, it’s something that hits me hard. And so we have in Minnesota started a T1International chapter. Um, so really just focusing fully on insulin affordability. Um, and we are going to be hosting a rally in March with the ADA and bringing in everybody that we can.

Quinn Nystrom: But yesterday actually we had a state Senate hearing on insulin affordability where I testified and then several other incredible diabetes advocates testified at an insulin affordability hearing with eight state senators and a state representative. And there were two MDs on that panel and it went so well and we had seven major networks, Star Trib and the Pioneer Press all pick up the story. And so, and of course, you know, the pharmaceutical companies, you know, kind of gave their usual, you know, the reason why the high prices are, is because it’s high deductible plans, you know, it’s like, you know, like this Scott, you know, but that’s okay. But we’re really hoping that we’re going to get legislation introduced in 2019. And so, you know, I’m very passionate about grassroots advocacy and that it works and that it doesn’t matter who you are, if you have a voice and a little bit of passion, you can make a difference. And um, so anybody who’s watching this, um, they can go to my website and email me if they’re interested in being a part of that movement with us in Minnesota. Um, we’re just collecting people’s names and putting them on an email list. And I’m emailing people, you know, the information about the work that we’ll be doing and getting as many people as we can involved in that. Um, because we can’t do it alone.

Scott Johnson: It sounds like the hearing went amazing. I’m so happy to hear that the founding of the chapter right there in Minnesota. We’ll definitely have your website up on the screen and in the comments so people can reach out to you. And over overall, otherwise outside of Minnesota, can find out how they can get plugged in to create a movement. You’re absolutely right about making a big difference and that’s how things happen. And so there’s so much work that goes into that often behind the scenes or goes unnoticed for those that aren’t really aware of all that happens. So thank you for all the time and energy that you put in.

Quinn Nystrom: I’m happy to do it.

Scott Johnson: So let’s shift gears a little bit, again. Let’s talk about Nick Jonas. Mr Nick Jones has been in the news a lot over the last few weeks. I saw him. Uh, so if you can’t tell, so I’m, I’m, we’re recording… I’m in an airport newsstand that I walked by that was just plastered with magazines, but I would love to hear more about you and Nick Jonas and what that was like, and fill us in.

Quinn Nystrom: I think like any type-one female, right? We thought that Nick Jonas would fall in love with us? He was our diet crush. He was going to fall in love with me. Scott, I don’t know why, why you chose Priyanka  over me. During my conversation with him, he had really fallen for me. But um, I guess not. I guess Priyanka has something over me, I think probably a lot of things, but um, no, I, I blogged for Ontrack Diabetes and I had gotten a call from my editor saying, you know, like, what are you doing next Tuesday? And she had said, and I said, oh, nothing much. And she said, Oh, do you want to interview Nick Jonas? And I was like, do I want to interview Nick Jonas? Yes, like I will drop everything to interview Nick Jonas! Right? And so I got to interview him on the phone, and you never know like with big celebrities, like are they going to be kind of pretentious, you know?

Quinn Nystrom: Um, but I found him to be incredibly down to earth. I don’t know if you’ve met him or spoken to him. He was incredibly down to earth and in the beginning, you know, I was told by his three publicists who handed him the phone on, you know, that it was going to be like, no, they had to approve the questions that I asked him. They told me I was going to be on a strict timeline, you know, with him. And if I went over, you know, you know, all that kind of celebrity stuff. Um, but he was very generous with his time. I found him to be very funny. He remembered my name. He was very, what I found very interesting. I asked him what his least favorite thing was about having diabetes. And, and I talked about this a lot in speeches about what Nick Jonas said, you know because a lot of people think of him as these sort of big celebrity with diabetes.

Quinn Nystrom: And he said what he hates the most is when people ask in the stupid diabetes questions. That when he’s out for a meal, that people ask him the ignorant diabetes food questions like, should you be eating that? Should you be having that? Right? Are you sure you should be eating this? And you know, I think it’s sort of reassuring that it’s like Nick Jonas, Mr Twelve Pack Hottie is being asked that, that like me regular Joe Schmo should not be as offended because like, if they’re asking him that, then everybody’s just plain ignorant. Right. Has nothing to do with our appearance or anything. But he just was so honest and vulnerable in that interview. I just ended up liking him more than I already did.

Scott Johnson: I haven’t had many celebrity encounters. I’m counting this as one of them, but like, you know, you have this vision in your mind and your heart of what you hoped this person would be like. It’s one thing when they totally crush that into a million pieces, but it’s another thing when they not only live up to what you hoped it would be, like expand that more. It’s so nice. It’s so cool.

Quinn Nystrom: He was that for me.

Scott Johnson: That’s so great. Not to say like I have like a man crush on Nick, but Nick’s a cool dude. Like he just, he just seemed like a cool dude. Somebody that I admire the way he carries himself with diabetes as well. And I love that he’s so active and all the work he’s done. It’s just good for diabetes, in general, to see, uh, to see just such a fantastic engagement and wedding and having him receive so much press. What’s the saying? Right? A rising tide raises all ships.

Quinn Nystrom: Well, and I think I have so much respect for him because I think you and I know there’s a lot of big celebrities who have diabetes who have chosen not to use their platform of power to do anything about the cause, and you know, maybe I’ll get criticism for calling those celebrities out, but it is very hard for me because you and I fight to use our maybe smaller platforms to try to speak out, when they naturally have these huge platforms they’ve been given and they can make such a huge impact testifying before Congress, raising a lot of money. Um, you know, talking with the media, things like that about diabetes and they choose not to. And I’m specifically talking about Halle Berry, Tom Hanks. Um, we did a lot of celebrities that people have no idea they have diabetes or they actually say bad things about diabetes and work against the cause. And so I really respected Jonas because he doesn’t have to speak about it, let alone speak correctly about it or raise funds about it. And he has really stuck his neck out for the cause and done amazing things and he’s very kind and generous. So I just give him a lot of bonus for that. And I think give him a lot of respect for that in the diabetes community and elsewhere.

Scott Johnson: That goes such a long way… Someone can vouch for his down-to-earthness… That goes a long way. One of the last things I want to talk about, it’s an important subject, but one that also doesn’t get talked about often enough, but we do a lot of work around eating disorders and type one diabetes with Center for Change. And I think that there’s so much work that needs to be done there. So again, like I know I’ve thanked you a million times and you deserve a million more, but thank you for putting yourself out there and spending so much time and energy on that part as well. But please tell us a little more about what that’s all about and the work you’re doing there.

Quinn Nystrom: Yeah. So it kind of happened by happenstance or kind of how the world works. I, I never expected to speak publicly about living with an eating disorder. You know, I always obviously was passionate about speaking about diabetes and being a diabetes advocate. Um, but several years ago I entered residential treatment and inpatient treatment for struggling with an eating disorder with bulimia. And after I got out of treatment and was in recovery, I was frustrated because my insurance company had not paid for my residential treatment. And so, because my advocacy background, I actually hired an attorney and, and sued my insurance company for not paying. And so anyways, long story short, we didn’t win the case because a lot of times, you know, the laws are set up against us as patients with insurance companies. Um, but I became very passionate to think I’m going to use the platform that I have as a diabetes speaker to speak out because I’m sure there’s other people who are in the same situation that I’m in, right.

Quinn Nystrom: And if I can do anything good, I’m going to do it. And so I ended up starting, I wrote a blog about it that got a lot of attention about living with type one and with an eating disorder. And then Center for Change called me back in 2016. Center for Change, uh, is an eating disorder treatment facility out of Orem, Utah. Um, they also have a location in Salt Lake City. And then Boise, Idaho. Um, they treat women and adolescent girls, um, inpatient and residential and outpatient with men. And they’re just a phenomenal program. And they have a specialty track for type one diabetes and eating disorders. So that’s why they had reached out to me specifically. And so they said we’d love to team up with you and really get the message out, right? Because the hard part is it’s such a complicated co-occurring illness to treat because if you can imagine you have type one diabetes, you are so hyperfocused on numbers, right?

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Quinn Nystrom: Counting carbohydrates, looking at blood sugars. People are hyperfocused on your weight, talking about your weight, talking about your food. When you go into eating disorder treatment, people are like, don’t talk about your weight, don’t talk about your food, don’t look at carbohydrates. They actually put duct tape over the food labels in eating disorder treatment because they don’t want you to focus on that. So they’re like complete opposites. So when somebody with type one diabetes goes into an eating disorder treatment center, these two are working against each other. And so if you go to a place that does not specialize in those two, it can be disastrous. So there are only a couple places in the US that actually specializes in treating both of them, so you really need to go to a place that specializes in the co-occurring of the two of them.

Quinn Nystrom: Um, and so I was really happy that there was a place that the treated both of them and didn’t really well and had a full team of experts with an endocrinologist, a CP, a nurse practitioner, a nutritionist, a therapist all that. Um, and actually two on the team have type one diabetes. So I always think like when you have street cred, I always think that’s a bonus, right? You know, I’m always like, oh, they know a lot, you know. But what’s been exciting is in the last two years of working with them, you know, we’ve gotten to fly all over the country speaking on college campuses with healthcare professionals. We’ve done community events, really raising the awareness because we know that studies have shown that young women with type one diabetes are two and a half times more likely to be diagnosed with an eating disorder.

Quinn Nystrom: So we know that there is a higher prevalence that somebody like myself would have gotten diagnosed with an eating disorder. But the sad thing is I started struggling with an eating disorder at 12, but I wasn’t diagnosed til I was 24. I struggled for 12 years in silence and nobody spoke to me in those 12 years about an eating disorder in the diabetes community. And I never heard about it at any conferences. And the thing is, a lot of times I think Scott, we only hear about diabulimia right? That’s the word that we hear kind of buzzed around, and we always hear about insulin omission. Well, I never omitted my insulin, but still, diabetes was a trigger for me when my blood sugars will go low, it would trigger a binge for me.

Scott Johnson: Yeah.

Quinn Nystrom: But I would purge in other ways. It wouldn’t be a purge by insulin omission. Um, because I was a national spokesperson for diabetes and speaking on the diabetes circuit, I was so obsessed with having to keep my A1c in check. Right. That was just my thing. So I never omitted insulin, so because my A1c was always in check, nobody flagged me for having an eating disorder, but that didn’t mean I didn’t have an eating disorder. So all these medical professionals that never flagged it for them. And so I’m passionate about educating these health care professionals on that they need to look for more just a double-digit A1c and that young women and young men need to also be aware of that. It’s more than just insulin omitting.

Scott Johnson: It seemed like a whole concentrated spiral of information that I’ve never thought of before you mentioned that. The other question that comes to mind, it seems to me like there’s some hesitancy to talk about it because they don’t want to introduce the idea to people who may not, who may not already know about it. And I’m sure that’s something you guys have wrestled and talked about. Talk about that a little bit like where do you find that balance between increasing awareness versus that tough point of introducing the idea?

Quinn Nystrom: I guess the way that we’ve talked about it is, you know, you look at studies because this used to always be talked about suicide, right? For a long time we talked about with suicide, do you talk about suicide prevention or do you just not talk about it at all because it’s going to give people ideas. Right? Studies have shown us now that, no, you talk about suicide prevention and that will actually prevent more suicides. So studies have shown us that. And so my personal belief is it’s actually similar with eating disorders in my experience. The very first time Scott that I spoke publicly about it was that the Students with Diabetes conference, Nicole Johnson’s conference down in Tampa? So it was a couple of years ago. She invited me down to speak about it. It was the first time I spoke publicly about it. It was a breakout session.

Quinn Nystrom: I didn’t even know if anybody would show up, you know, into the breakout. I think I was competing with like sex, drugs, and diabetes or something. And it was a packed room of men and women. And I’ll never forget the lineup of people I had after the session was over, men and women, um, probably had 25 people lined up and one after the next who came up to me who said, I had been struggling with this for years, but nobody has ever spoken about this. Where can I get help? And I think that it has to be named publicly or else people suffer in silence. Uh, for instance, I had spoken about this on Stacy Simms’ podcast [crosstalk] and I got a private Facebook message from a woman who has been struggling for over 20 years with this. And she said, I have never heard anybody speak publicly about this. Are there any resources that you can give me so that I can get help? And so I’m passionate about, again, not going into, into the weeds of the details of what I did. I try to stay as vague as possible. And then I also try to say how it ruined my life and how much happier I am now that I’m healthy and in recovery.

Scott Johnson: Yeah.

Quinn Nystrom: Because I think that’s the message. You want people to get to recovery. But I think if we don’t, I think people can’t relate and they don’t understand what we’re talking about or I think, oh, keep thinking that it’s diabulimia and again, there are a lot of people who omit insulin, so I’m not saying that it’s not insulin omission, but there a lot of people who are on a full spectrum of symptoms with type one diabetes.

Scott Johnson: Sure. You mentioned resources, so your website is filled with a lot of great information. It’s quinnnystrom.com, we’ll put that up on the screen and in the links as well. Is there anything specific to eating disorders, Center for Change that you want to mention that we’ll put up as well?

Quinn Nystrom: So I have some blog posts on my website that people will find. I blog for them once a month and then they can also go to centerforchange.com, uh, where they have a whole page dedicated to their type one diabetes and eating disorder program. And then they also treat type two diabetes and eating disorders, um, because we also see a high incidence of binge eating disorder, um, and diabetes, type two diabetes.

Scott Johnson: Diabetes and food is a complicated and tangled web.

Quinn Nystrom: It is.

Scott Johnson: Well, we have covered a lot of different topics. Is there anything that comes to mind that I forgot to ask that we haven’t covered?

Quinn Nystrom: I think you went around the world. I really enjoyed it.

Scott Johnson: I did too. It’s been a treat having you on the show, we will have to catch up again in 2019. I can’t wait to hear what you accomplished. Thank you again for all you’re doing and please reach out. Let us know how we can help. It’s been a blast.

Quinn Nystrom: Thank you so much, Scott.

Scott Johnson: You are very welcome.

Scott Johnson: As you can see, Quinn keeps herself busy and is accomplishing a lot. If there’s anything that she’s working on that you’d like to hear more about, please let us know or reach out to Quinn directly. She would love to hear from you.

Scott Johnson: And as usual as a special thanks to all of you watching, I have a couple of special mySugr tote bags with some goodies inside like a Pop Socket and a few stickers and I’d like to give away. To enter or leave a comment below. Let me know if you enjoy today’s episode and before next week’s show, I’ll randomly pick two lucky winners and announce them during the start of next week’s broadcast, and yes, we will be broadcasting next week.

Scott Johnson: Once again, today’s episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more all for just $49 every month. Learn more at mysugr.com/Facebooklive and please be sure to tune in next week for a special Christmas episode where I am talking with the amazing Niketa Calame-Harris, professional actress, producer acting coach, and the voice of Young Nala in Disney’s classic animated film, The Lion King. We will talk about her experience living with diabetes over the past 20 years and, um, how she deals with that and all of the activity that she’s involved in, in the acting scene and producing scene and acting coach and navigating relationships. Just a fantastic conversation with a wonderful Nikita. I can’t wait to share that with you. Thanks so much for joining me again today. Please give this video a like, share it with your friends. Have another amazing day and I’ll see you next week. Happy holidays.


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