Quinn Nystrom live event and an update on her diabetes advocacy

You may remember her show back in December, but this time she's live in the studio today here in San Diego where it’s far warmer than her native Minnesota this time of year. Why is she in town? She’s part of an event we’re hosting in partnership with TCOYD and Center for Change at the San Diego Botanic Garden. On today’s show, we’ll be looking at the advocacy work Quinn has been doing in Minnesota since our last talk, including testifying to Congress for the first time.

Summary

• Introduction to Quinn
• Testifying about diabetes and insulin for a House Committee
• Her work with Center for Change
• Quinn's live event, "Redefining Defeat"

Resources

• Quinn's Website
• Center for Change - treating diabetes and eating disorders
• T1 International - Insulin4All

Interview transcript

Scott Johnson: Hey, do you ever get confused or frustrated by diabetes? Happens to me too. How about you Quinn? Maybe it'll help to know that you are definitely not alone in that feeling. The most important thing you can do is keep trying and keep learning and by tuning in today, again you're taking another small step in the right direction and I'm proud of you for that.

Scott Johnson: What's up Monster Tamers. Welcome to a special bonus episode of "Live, with Scott!" Thanks so much for tuning in. My name is Scott Johnson. I've been living with diabetes since I was five years old and the diabetes social media space, that's you, by the way, has been an important part of my wellbeing for a long long time. Thanks for helping me along. I have a very special guest with me today. The amazing Quinn Nystrom is back with us and we enjoyed having Quinn on the show back in December. She's in town for an event we're hosting tonight in partnership with TCOYD and Center for Change at the beautiful San Diego Botanic Garden.

Scott Johnson: If you're in the San Diego area, we would love to see you there this evening. You can find more details about that on our Facebook channel, Twitter channel and all our social media channels as well as Quinn's channel and Center For Change too. Now we also know that a lot of you watching maybe won't be able to hop on a plane or make it to San Diego so Quinn very generously agreed to stop by the office today to give us a brief overview of what she'll be talking about tonight. And we're going to try to livestream some, all, of the event tonight. I don't know what the setup is going to be like there so we'll see what we can do. I'm not making any promises but I'm going to do my best. I will promise you that.

Scott Johnson: But that's not all. Quinn has been incredibly busy with some amazing advocacy work back home in Minnesota and we'll hear more about that too. Quinn knows this but you all might not know. I was born and raised in Minneapolis, Minnesota and moved here to San Diego just about a year ago for mySugr so I made sure to wear another awesome Minnesota shirt today especially for this. You betcha. If my fellow Minnesotan and I let our Minnesota accents fly a little bit today we'll apologize in advance. I have to throw a quick sponsorship message up to today's episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support and more, all for just $49 per month. Learn more at https://mysugr.com/facebooklive.

Scott Johnson: Now, more on this week's guest. Today's special guest. Now, Quinn, I'm going to make you blush a little bit and it's going to be super awkward because I'm going to read a bunch of your bio stuff while you're right here next to me. But it is super impressive and our friends watching deserve to hear it in its full glory. Relax, make yourself comfortable and enjoy hearing this.

Scott Johnson: For the past 22 years Quinn Nystrom has been sharing her story of living with type 1 diabetes to audiences across that country. Speaking to over 300,000 people and growing by the day. Tonight we're going to be adding to that number as well. She is a published author of the book "If I Kiss You, Will I Get Diabetes?" and is a regular blogger for ontrackdiabetes.com. As a professional speaker, she travels across North America to diabetes camps, convention halls, corporate offices, United States Congress and yes, even the White House.

Scott Johnson: Her company Q speak allows her to speak, write, consult and raise funds for diabetes. Quinn has been featured nationally on XM Radio, Glamour Magazine, MSN, Diabetes Forecast, Readers Digest and TLC. She's currently the National Diabetes Ambassador for Center for Change, speaking out about the high prevalence of people with type 1 diabetes and an eating disorder. She received her Bachelor of Arts Degree from Hope College and her Master of Science Degree in Communication Management from Syracuse University. Quinn, thank you so much for joining me again.

Quinn Nystrom: Happy to be here.

Scott Johnson: And I'm sure that you are feeling alright about getting out of the snow in Minnesota?

Quinn Nystrom: I am more than thrilled to get out of this very snowy weather in Minnesota and be here in sunny San Diego.

Scott Johnson: Record-setting right?

Quinn Nystrom: Record-setting winter. I'm sure you're happy to have moved out of Minnesota and I'm happy to have flown out of Minnesota to be here in San Diego.

Scott Johnson: Yeah. It's been a little rainy here. A little chilly.

Quinn Nystrom: Yeah, you guys are thinking this is cold. I'm thrilled to have gotten out.

Scott Johnson: Yeah, yeah. Well welcome. It's great to have you here.

Quinn Nystrom: Thank you so much for having me.

Scott Johnson: There's been a lot going on in the great state of Minnesota around diabetes advocacy. I would love to hear more about that. Why don't you take a few minutes to fill us in on some of the things that have been going on?

Quinn Nystrom: Thank you so much, Scott. We had such an exciting day on Tuesday. It seems so crazy that it was just 48 hours ago that we had such an exciting day on Capitol Hill in St. Paul. We had not had a state diabetes advocacy day in 20 years in Minnesota. With the issue of insulin affordability really reaching a fever pitch we wanted to do a groundswell support and make a movement and have our voices heard and show up at the capital and so we had this Diabetes Advocacy Day in St. Paul and our big point was that we wanted insulin legislation written up by different elected officials and we wanted those bills heard in committee and we wanted to show those elected officials that we supported that legislation.

Quinn Nystrom: We wanted to make sure that we got as many people there as possible. Minnesota did not disappoint. It was very cold, it was very snowy. We had almost 100 people show up so we were thrilled. Our rally, of course, the inside rotunda was reserved that day so we had the outside steps of course but we were all out there excited and thrilled to be showing our support, having our voices heard. We had made these pennants with insulin vials that we were waving around.

Quinn Nystrom: We had four pieces of legislation that we were really supporting. Three pieces of that legislation the American Diabetes Association had backed. They were also there supporting that day and then also T1 International, who's a great organization who's really supporting. The Cause of Insulin Affordability was there. And one of those bills was an emergency insulin bill, which has been passed in other states and all four of those bills actually passed through Committee so we were really really excited.

Quinn Nystrom: I got to testify in a House Committee which was a first time for me to get to testify. And it was a little bit intimidating. I had one House Committee member actually ask me sort of point-blank why the reason for the high cost of insulin and it's very different when someone starts to ask you in a conversation why the cost of high insulin, it's another when you're asked on the record about that. But it went well and the bill proceeded so we were really really happy with that.

Scott Johnson: That's great. And I know there's all the action that happened and what people could see but I also imagine that there's a ton of behind the scenes work that goes on and I know that you spend a lot of time and energy doing that so thank you for all that you're doing in those efforts. That means a lot to everyone living with diabetes. I don't believe you can get enough gratitude for it and everyone else working and everyone who showed up there to support all the advocacy efforts, especially demonstrating outside. Do you remember how cold it was?

Quinn Nystrom: I think the high that day was 10 degrees. It was really cold.

Scott Johnson: 10 degrees, outside in St. Paul, Minnesota demonstrating for better access and affordability on insulin. That's amazing. Monday was a big day with an announcement from Eli Lilly. I would love to hear some thoughts on that. Eli Lilly made an announcement that a generic version of their Humalog insulin, what is the term, an approved generic or something like that? I would have to look up the exact details but what are your thoughts on that?

Quinn Nystrom: Yeah, you know to me it's sort of this double-edged sword in my personal opinion. I guess any movement is positive movement on one end. The positive thing I'm going to say is I think is that they're feeling the pressure of the phenomenal movement on insulin affordability, kind of insulin for all movement in my opinion. Because clearly, they have done nothing all these years as maybe we've been a little bit quieter and there hasn't been as much movement and now in the last couple years as our groups have gotten more and more vocal, right as this has reached more of a fever pitch and we've gotten more vocal, I think now they're thinking, "We can't not do anything."

Quinn Nystrom: And now they've made this announcement and so I think they, our group is really making this big difference now where they're having to come out and say, "Okay, we're going to slash a price to 50%," so that is a positive thing and I'm not going to say it's not a positive thing. But I'm also not going to say, "Oh now, we should all be giving them massive kudos for cutting something for 50% when we've all been overcharged all these years." And now we should be saying, "Oh great job, thank you so much. Now you're only overcharging us 2,500% instead of 5,000%."

Quinn Nystrom: I'm not going to say, "You guys are the saviors now for only jacking up our cost 2,500%. I think there's still a lot of things that can be done by the pharmaceutical companies. I also think I'm in the camp that it's not just the pharmaceutical companies that are to blame. I think it's the whole supply chain. And so I think it's a very limiting thought if we just think that it's just the pharmaceutical companies that are to blame for this issue.

Quinn Nystrom: I think we have to look at the pharmacy benefit managers, I think we have to look at the health insurance companies. We have to look at everybody to see why these costs have gone up so much here in the United States and I think that's why I've been such a big supporter of these price transparency bills so that we can look at why the cost has gone up on all the different parts. Because in the U.S. as we know it's quite complex. By the time drug is dispensed to where the drug is made and by the time you actually get it at the pharmacy.

Scott Johnson: Yeah. Like many things that we deal it's much more complicated than it appears at first glance. I agree that it seems like a positive signal and that change takes a long time and well see what happens next.

Quinn Nystrom: Yes.

Scott Johnson: We'll see what happens next.

Quinn Nystrom: Yes.

Scott Johnson: Yeah. Let's spend some time on Center for Change. That is what brings you here for tonight's event. I would love to hear a little bit more about that organization and some of the work that you do for them and then we'll kind of pivot into more about tonight's event.

Quinn Nystrom: Yeah. I'm so thrilled to be Center for Change's National Diabetes Ambassador. As some people may know, some people may not know, young women with type 1 diabetes are 2 1/2 times more likely to be diagnosed with an eating disorder in their lifetime and so there is a much higher prevalence for this co-occurring illness. Center for Change is out of Orem, Utah. They are a women's specialized eating disorder treatment facility. They also have a treatment facility in Salt Lake City. They also have one in Boise, Idaho as well.

Quinn Nystrom: And they have eating disorder and type 1 diabetes specialized eating disorder track for women. They also treat men on an outpatient basis too. But women for inpatient and residential. And so I get to do this incredible work with them where I get to travel around the country and really raise awareness on this topic because I've always felt for years, and again my background really is in speaking in the diabetes community as you know Scott and I always felt like there really wasn't a lot of talk about, in the diabetes community, talk about eating disorders.

Quinn Nystrom: There was always this thought about if we talked about it this would be giving people ideas about it. It always felt that was a little bit backwards. It was sort of how we used to think about suicide where if we talked about suicide we were giving people ideas about how to commit suicide. And we know with research that that's just not the case. And really if we have honest conversations about it, that I think we are doing it and we do it in a safe way that we're allowing people to feel safe to talk about it.

Quinn Nystrom: And again, for somebody like myself who has had bulimia and has had their type 1 diabetes be a trigger for their eating disorder I want to let other women with type 1 diabetes know that this is something that is common. That they don't have to feel ashamed about it. That it's more common than they know. That they don't have to feel like they're alone in this battle. And I want them to know that there is a place where they can get help. That there is recovery that can await them. And that they don't have to feel alone, embarrassed, ashamed.

Quinn Nystrom: Tonight, when I get to go out and speak and show that I'm a professional woman who's gone on to find success in my professional career, gone on to really have a great fulfilling life, I hope that by my example they can see that. And that they also feel comfortable too that they can open up about their own life. And so that's really what my biggest hope is. And that speeches like that I give tonight is about redefining defeat in one's life. Even though I may be talking about overcoming defeat in my life with diabetes, with an eating disorder, maybe that may not be the defeat that they're thinking about in their life. Maybe that is something else, fill in the blank. Maybe it is in their life. But I think every single one of us has overcome some type of defeat in their life.

Scott Johnson: Yeah. Can you talk a little bit more ... You said something interesting to me about diabetes being a trigger for eating disorders. Can you delve into that a little bit more?

Quinn Nystrom: Yeah. I think we know that the statistic about, specifically with women ... With type 1 diabetes in women being 2 1/2 times more to get an eating disorder and part of that is we know that when you're diagnosed with type 1 diabetes at a young age you're at a formidable age. And if you think when you're diagnosed with type 1 diabetes a big thing is you're sort of trained and honed in about good food bad food, good number bad number, free food. If you remember that right? Back in the 90s, the 80s.

Quinn Nystrom: And so for me with my eating disorder, it was like I would be told ... Or like when I would have a low blood sugar for example, I would feel like then I could eat whatever food I wanted. Then I'd have a binge. And then I could eat whatever I'd want and then I'd feel so guilty that then I would purge afterward because I would feel those feelings of guilt after I would eat bad foods. And then that would start the cycle of the eating disorder. And again what I always say to people is, "I don't feel like recovered, past tense, from my eating disorder because I still have diabetes." I haven't recovered from diabetes because there's no cure from diabetes. And so I feel I have to actively choose recovery every single day of my life because I still have diabetes.

Quinn Nystrom: And so every single day I choose recovery because I have diabetes. Having a low blood sugar, you know I had a low blood sugar this morning. I had to choose this morning when I have a low blood sugar, what am I going to do to treat that low blood sugar? And what am I going to choose then to treat that low blood sugar and what am I going to do to combat that low blood sugar. And so there are just different things that are going to trigger people in different ways and I think also those words that are used when you were diagnosed and those different things that trigger different people with diabetes and how you can rework those in your mind to make it healthier.

Scott Johnson: Yeah. Kind of reframing the thoughts.

Quinn Nystrom: Exactly.

Scott Johnson: Is there anything involved with ... I don't know much about eating disorders. I know that with my diabetes that there's a lot of focus on carb values. We're so zoned in on these nutrition labels. And I imagine in treating some eating disorders that that can be detrimental. And is that part of why Center for Change created a special track around treating diabetes and eating disorders because that there's such a conflict between those two?

Quinn Nystrom: Exactly. Absolutely Scott. That's a great point. Because the reason why it's so critical, one of the reasons I should say why they need to have an eating disorder center. If you were looking for somebody that you know or if you're somebody who has type 1 diabetes and an eating disorder and you were looking at sending somebody or yourself is looking at going to a place, you need to specifically look, do they have a place that has a type 1 diabetes and eating disorder specialty track?

Quinn Nystrom: The reason why is because the two completely work against each other in the sense of for an eating disorder treatment program, if you go in there ... I remember when I went to an eating disorder program. For example, on all the nutrition labels, they would have a piece of black duct tape on all the nutrition labels. Because they didn't want you to see any of the carb counts, the calories counts, anything. But as somebody with diabetes, you have to see the nutrition labels because you have to know the carb counts to dose your insulin. You have to know everything.

Quinn Nystrom: When I went into treatment, I remember girls who didn't have diabetes, they would try to bribe me with different paraphernalia they would have because they would want to know what the carb counts were of things. And so you would have to deal with different things. Again, you would also have to peel back the labels. Again, you want to have a team that understands and is going to work with you on having to see labels, who's going to help you look at carb counts, who's not going to make you feel ostracized from the whole rest of the group because again, you are again going to feel like you were right when you felt like when you were diagnosed with type 1 diabetes. You're going to feel like the black sheep all over again.

Quinn Nystrom: It's really great when you can be back in a group with people with diabetes. Because when you can be back with people who have diabetes and eating disorder, at least you feel part of the group again in an eating disorder treatment center. And that's why Center for Change is phenomenal because they have a designated team of specialists who just treat that group. And you're in that group together and they have groups just for that group of women every single week so you feel together with that group of women.

Scott Johnson: Yeah. That's amazing. That's amazing. Wonderful.

Quinn Nystrom: Yeah.

Scott Johnson: Well thank you for diving into this.

Quinn Nystrom: Yeah, of course.

Scott Johnson: Tonight we're going to be going into that and more. I think it's amazing that Center for Change allows you to help spread that awareness and knowledge to the world. Thank you, Center for Change for helping us bring Quinn to Southern California and thank you to TCOYD for partnering up with us on this. If you happen to be near southern sunny San Diego and the San Diego Botanical Garden we would love to see you tonight. If not, I'm going to do my gosh darn Minnesota best to bring it to you via the computer. We'll see what the setup is like tonight. Thanks so much for joining us here tonight. I'm going to do a little bit of housekeeping to wrap things up and Quinn, how can people connect with you from here on out? If they can't make the event tonight or whatever's next.

Quinn Nystrom: Yeah, so the easiest way is if you go to my website, which is quinnnystrom.com, so Q-U-I-N-N-N-Y-S-T-R-O-M dot com. You'll see my name on the bottom of the screen. And if you go to my website you'll see all my social media accounts and you can also message me there. I'd love to hear from any of you and you can also find my two blogs that I write for there. I write for Center for Change once a month and I write for OnTrack Diabetes twice a week. You can read all my blogs and follow me on social media and again, you can reach out and ask me any questions that you have. I always love to hear from people and I'd love to see anybody at tonight's event as well or you can watch us livestream. Hopefully, Scott will work his Minnesota magic.

Scott Johnson: Great. And we'll get Quinn's website in the comments down below here or off to the side or wherever they show up. And I'm going to do another quick sponsorship message so 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 per month. Learn more at mysugr.com/facebooklive.

Scott Johnson: And then next week we will have the amazing Megan Cornelius, aka Pushups 'N Pumps and she's going to chat with me about keeping it real and not sugar coating life with diabetes. You won't want to miss it. All right, with that, thank you so much, Quinn, for coming and sharing your time with us. Very generous. We'll see you in a few hours tonight.

Quinn Nystrom: Looking forward to it.

Scott Johnson: Folks, thank you for joining us today. If you liked this show, please share it with your friends. Give us a like. Have another amazing day and we'll see you soon. Bye.

Quinn Nystrom: Bye.

Redefining Defeat event transcript

Remarks have been edited for clarity

Quinn Nystrom: Thank you so much. I'm so thrilled to be here tonight. One, as some of you know, 'cause I got to meet some of you earlier, I'm from northern Minnesota where we've already gotten a couple of feet of snow and there's gonna be another foot of snow coming on Saturday. I was thrilled at the notion of escaping the snow for a San Diego business trip and extended that trip over the weekend for some sun. It's really great to be in the sunny weather, where I've heard from some of you, this is actually kind of cooler weather. But I think this is very summery.

Quinn Nystrom: I will explain then how my story brought me in front of you, here and in San Diego, today. When my younger brother Will was diagnosed with type 1 diabetes, he was five years old. Nobody in our family or extended family has type 1 or type 2 diabetes. My younger brother was five years old when he was diagnosed with type 1 diabetes, and nobody in our family had diabetes and so it came as quite a shock when he was diagnosed. Now, so many of us who have diabetes or have a family member who has diabetes, you know what a shock it comes to the family members, as well, because not only is the person with diabetes now having to learn this new regimen of what life is like now having type 1, but so does the family.

Quinn Nystrom: It's about what types of foods to eat, what time of day to eat. When to take your insulin if your blood sugar's low, when to eat food. It's this whole new life. As a ten-year-old girl, I remember when my parents told my younger brother and me, "Will has type 1 diabetes." I remember going down to the elementary school library, that next day and I asked for books about diabetes 'cause I wanted to learn more about what was this life going to be like, for Will. Now, the only books they had in that library were two cookbooks about how to cook for diabetics, right? That wasn't very helpful to me as an elementary school girl. And the other was just like a medical jargon type book, which that didn't really help me as a ten-year-old girl either.

Quinn Nystrom: But I was determined to do whatever I could to help my younger brother live his best life with diabetes and help find a cure for diabetes. I didn't know at the time what that really meant, but what that meant in fifth grade was starting to knock on neighborhood doors and raise funds for diabetes. Here's me at 10; I'm in the pink skirt, and I was determined to talk about diabetes to classrooms of mine who wanted to hear what diabetes was, what diabetes wasn't, because I saw kids talking to my younger brother Will about, saying, "Did your parents give you too much candy and that's why you have diabetes?" Kind of putting those blame type questions on him. I wanted to have kids ask me those questions so I could explain to them what diabetes was and what diabetes wasn't.

Quinn Nystrom:  Now, at the age of 13, I was a regular 13-year-old girl. I was interested in guys, grades, and guys. I did not have diabetes on my brain at all. Actually, when my younger brother Will was diagnosed, my parents had asked the pediatrician at the time what was the likelihood that my older brother and I could get diagnosed with diabetes? The pediatrician at the time said, "That is impossible. Your family would be on the cover of the New England Journal of Medicine if that was to happen."

Quinn Nystrom:  That's kind of shocking because I'm sure you've never seen my headshot on that magazine, or journal, and you've probably never seen sort of a headshot style on that journal. So two and a half years later when I was brought into his office and diagnosed with type 1 diabetes, needless to say, I was shocked. Because he had told my family that it would just be impossible. As a 13-year-old girl, who was already kind of going through the adjustments of life, not feeling like I fit in, feeling like I stuck out amongst everything in my life, now I was getting diagnosed with type 1 diabetes; this chronic, incurable illness that had no cure in sight. So I really felt like I stuck out, now.

Quinn Nystrom: I was mad at my family, I was mad at my parents, I was mad at everybody. My doctor at the time, he didn't make it any better. He said, "You know what Quinn if you can just hold on for five years, you'll have your cure by the time you get to college." You know, the sad thing is that now that I speak all these years later, I hear that a lot of other people have heard that similar story, too, when they were younger. Right? That they were sold something similar. I think that's always sad, whenever we kind of promise something that large.

Quinn Nystrom: At 13 years old, now I was devastated to be diagnosed with diabetes and the last thing I wanted to do now was talk about diabetes or have anything to do with diabetes because frankly, I was embarrassed, I was ashamed. I felt really uncomfortable associating with any part of it. I did not want to go down early to the nurse's office, before the lunch hour. I became quite introverted at school and became quite depressed. That went on for about a year and a half for me. I really, really struggled and then my parents got this idea that they would send me to a place...

Quinn Nystrom: Oh! I forgot that I had this slide. Well, you guys probably know this, but my life kind of went from this carefree sort of 13-year-old life to in the split second, this was all my supplies that I was going to be carrying. That there was not going to be this carefree, I could just bring my backpack and my books. I was going to have to always sort of carry this list of supplies and things around with me. So I couldn't just be like the rest of my girlfriends anymore and there was sort of this mourning period, for me.

Quinn Nystrom: I love this thing that came out by diaTribe last year, because I thought it was so fitting when you're kind of going through this thing and I still go through it now, 20 years after having type 1 diabetes, but when people say sort of, "Why do you have that blood sugar, Quinn?" Sometimes, maybe I know the answer and maybe ten percent of the time, I have no idea why. Or 95 percent of the time, I don't know why and I want to point to you know, like stick this chart out and say, "Well, it could be one of these reasons." I thought it was so helpful to show this, and I show this at a lot of presentations I give with healthcare professionals 'cause I think it's important to say, "There are so many different factors that affect your blood sugar and sometimes we don't know all the different reasons why, at that moment, it could be affecting."

Quinn Nystrom: My parents decided after a year and a half of mourning that they would send me to a camp called Camp Needlepoint. It is a real camp; it's a diabetes camp just on the other side of Minnesota and they thought because I wasn't willing to talk about diabetes, and I wasn't willing to address anything, they thought what would help me is by sending me for a week of my Minnesota summer, over to Wisconsin for Camp Needlepoint, for a week.

Quinn Nystrom: I was crushed. I was probably devastated more. I said, "I will never go." This is, of course, an adolescent girl, right? "I hate my mother, I'll never speak to you again." She brought my aunt for reinforcement, I was kicking and screaming the whole way to Camp Needlepoint. They threw me in the car, we went to Camp Needlepoint and sure enough, I would say, looking back on Camp Needlepoint, it is the single thing that I think almost saved my life because for the first time, even though my younger brother had type 1 diabetes, it was being around other young girls my age, who had type 1 diabetes, who were showing me through their actions of just getting up every day, doing regular camp activities. 'Cause I'm sure, how many people in here have gone to diabetes camp?

Quinn Nystrom: Yeah. It's not... You know, I had this perception that people would walk around like, in white lab coats and like, have hypodermic needles and we'd be like, in lectures or something and it was very far from that. It was a very regular experience, just like any other summer camp. It was more seeing other people just like you. It was pretty incredible for me to see that.

Quinn Nystrom: After that, I went back and kind of redoubled down my efforts and decided to speak and be a diabetes advocate at the local and state level. I applied for a position with the American Diabetes Association, called the National Youth Advocate. They choose one young person a year to fly around the country and represent the ADA. They chose me back in 2002 and 2003.

Quinn Nystrom: It was an incredible experience of getting to go to the White House, getting to travel around to different diabetes camps, getting to really see that your voice really matters and that if I really learned, at this young age, to strengthen my voice and that we could talk up about issues that are really important, that people would listen and kind of make change with these different issues that affect people with diabetes. I continued to do that work over the years, and now I do that work still, full time, as a profession.

Quinn Nystrom: But the other reality that I was living through this time was, and maybe some of you guys have seen these things on social media. I know I've read these things on social media myself. So when you see, you know, complete your meal … Then, of course, somebody highlights buy a giant soda to help with diabetes research. Right? They think they're so funny. Or, I don't know if you guys remember this; this was about two or three years ago. This was the CrossFit CEO, he had redone the Coca Cola label to say, "Coca Cola, Open Diabetes." Then he tweeted out, "Make sure you pour some out for your dead homies."

Quinn Nystrom: What's really interesting is he sort of doubled down when people really tried to kind of go at him to apologize, and he stepped down and doubled down on this when they tried to make him at least clarify on type 1 and type 2 diabetes. And he continued to double down on his statements. You guys have probably seen a lot of these, right? Believe it or not, [inaudible]. It's like, enough of us spend how much on one bottle of insulin? If we could do it eating a couple of lemons, we would have done it by now. We would have shared it a lot more than 11000 times.

Quinn Nystrom: This was actually a slide that I saw at a presentation; a nutritionist was giving a presentation before me at a conference I was at. That's why it's kind of cut off. I don't take issue with the sidebars and the [inaudible] that she was using. What I took offense to was the graphic that she used to describe diabetes, because even though I have type 1 diabetes, my younger brother has type 1 diabetes, I always think it's important to talk about the stigma and the shame that oftentimes even, I think as a type 1 diabetes community, we put on type 2 diabetes community, and how unfair it can be. We're all working together to really fight the cause and to raise awareness, and I think any time we stigmatize any [inaudible], it's not helpful. How hurtful that is, to stigmatize anything, to say, "Well, that's what this disease looks like." When we know that type 1 and type 2 diabetes and pre-diabetes looks like a lot of different things.

Quinn Nystrom: This was when I interviewed Nick Jonas. I interviewed him for an OnTrack Diabetes blog post that I did, or we did a podcast. What I always thought was really interesting about this was, because sometimes people ask about famous people who I've gotten to interview for this blog or podcast, was about the different famous people. One quote that I thought was so interesting about Nick Jonas is, I always thought, "Oh, he's a famous person. He probably has a much kind of easier, more carefree life," you know?" Maybe he doesn't get heckled like sometimes I feel I do with diabetes and sort of dumb questions or ignorant comments.

Quinn Nystrom: I asked him about what sort of, the best thing about having diabetes was, and the worst thing about diabetes was? And the best thing was, was he was talking about using his story, being a positive thing. But his negative thing, which I thought was really interesting was, he was saying how he gets a lot of those questions about lifestyle choice, about the food police. It just shows, I think, that it affects all of us, right? No matter what you look like with diabetes, we're often sort of affected by the diabetes food police and ignorant questions that we have to combat, and have those sort of frustrating moments that are sort of a headache, or you're kind of hitting your head against the brick wall. Just know that we get those, and we have to deal with those as well as we can. Some days I feel like I do a better job than other days, depending on how I'm feeling.

Quinn Nystrom: The part of my story that I wasn't sharing as I was going around, speaking about diabetes was, I was really struggling for years, as I said earlier, with some anxiety and some depression and over the years that had turned into an eating disorder for me. It wasn't until I was 24 years old and I was in a doctor's appointment where I was diagnosed with bulimia. What I didn't know at the time was the high prevalence of young women who have type 1 diabetes, who also struggle with an eating disorder.

Quinn Nystrom: Even though I traveled around to all these diabetes conferences and diabetes events, I'd really never heard a lot of people talk about sort of the high prevalence. So I didn't know there was a high incidence of it, just 'cause I didn't hear it talked about a lot at these conferences that I attended as a spokesperson and at these different events that I attended.

Quinn Nystrom: When I was diagnosed, I thought I was all alone and I thought I must be the only person with diabetes that struggled with this. Again, I think for me, I didn't even think I had an eating disorder. I thought that more of it was, I was diagnosed at 13 years old with type 1 diabetes. That diagnosis made it harder for me to lose weight. I chose to sort of cut some corners to make it easier for me to lose weight. I'm allowed to do this because those were the cards I was handed, and so my ends were to justify my means. I justified it in my own mind and didn't even sort of quantify my own diagnosis. So that's kind of to the point that I had gotten, but I was at a bad place, and so I needed treatment and I went and got treatment, which was the good point. That there were places out there that treat people with type 1 diabetes and eating disorder on a specialty track. Over the years, there have become more and more and that's why I'm blessed to be the [inaudible] to have that track.

Quinn Nystrom: I love this quote by Brené Brown, "Owning our story can be hard, but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky, but not rarely as dangerous as giving up on love and belonging and joy. The experiences that make us the most vulnerable, only when we are brave enough to explore the darkness will we discover the infinite power of our light." I never felt like, when I first started speaking clearly about diabetes, I never thought that I'd be speaking publicly about living with an eating disorder. But when I saw that there was not a lot of spotlight being put on people who were struggling with type 1 diabetes and an eating disorder, I thought, "If we can share more stories so that hopefully then more people know that there is help and that there's more treatment and that there are people who are struggling." Studies have shown that young women are two and half times more likely to be diagnosed with an eating disorder if you have type 1 diabetes. So it is a high prevalence.

Quinn Nystrom: So, over the years I've kind of created these sort of nine small rules that I live by, about gaining a voice and a choice. One, I say if you get the choice, you can kind of choose to be the victor or the victim in your life. I learned that when I was diagnosed with diabetes and at Camp Needlepoint. I could have chosen to kind of sulk the rest of my life and just wallow in this diagnosis. My parents, as much as they wanted to snap me out of it, could not have snapped me out of it. But I was the only one who was going to stay disappointed and so I had to be the one who was going to make the choice to dedicate my life to helping find a cure for diabetes and improving my life and accepting the terms that I had been diagnosed with.

Quinn Nystrom: Two is stand up and fight. For me, it was about stop complaining about how tough it is and go out and advocate. So, for me, it was therapeutic to actually stand up and go and do advocacy work. Maybe that's something else for you, that you like to advocate for, to strengthen your voice. But I always found that no matter what I did, when I strengthen my voice, it was always helpful that I felt like I was getting a voice and a choice in something.

Quinn Nystrom: Celebrate the small victories. Does anybody celebrate their diaversary? No? I see some hands. I made this myself, for my own, this last year, so there were 19 syringes on there for my diaversary. I think I got all of 'em. But ever since my younger brother, Will and I, for some reason, my mom would celebrate our diaversary. She'd bring us out for a meal, and still to this day will write us a card every year and just talking about what it means for her to see us living with diabetes every single day of our lives. I've always appreciated it. Nothing in that card has anything to do with our diabetes management, our A1Cs, how often we went to the doctor, how often we went to the pharmacist or anything like that. It has to do with how hard she saw us working that year and living our life to the fullest. That's what she always wants to recognize every single year with us. 'cause she knows she can't switch out pancreases with us, but she can be there and support us every single year and be a strong mother and do that.

Quinn Nystrom: Be kind and extend grace to yourself. I always say I think diabetes is probably one of the most exhausting diseases because you never get a day off, you never get a minute off. I've never met somebody with diabetes who's not tired or exhausted. I think because you don't get to just take some time off, a weekend off, you're living with it all the time. And so I think it's important, okay, so your eating blood sugars didn't go right? Okay, what's the next best thing I can do to get my blood sugars back on track, right? And not doing the self-blame.

Quinn Nystrom: Knowing that perfectionism is not the goal, because this thought about being a perfect diabetic, which sometimes I think was kind of drilled into us and into our heads, is just not an obtainable feat.

Quinn Nystrom: Diabetes doesn't define you, but it refines you. You know, I think that this whole thought about we're not a diabetic. That's not who we are, that's not everything about you. But I think I always reflect back and think being diagnosed with diabetes has certainly, I think, made me a better person and it's really refined me and my character. If I'm able to really reflect back and see how that has impacted my life, and how I act, and how passionate I am on different issues, certainly.

Quinn Nystrom: Six, don't put your worth in anyone else's hands; find your worth in hard work and perseverance. Don't lose sleep on labels. I think it's easy to see what other people can think about what diabetes is on social media, on Saturday Night Live, on just the nightly news and think, "Oh, this must be what everybody thinks about diabetes," or "This is what people think about my diabetes." That can be frustrating and that can be defeating, and it's just not worth it. It's about figuring out how you can compartmentalize that and let that go, and still figure out how we can advocate and stand up for things that you know you can be passionate about and make change with.

Quinn Nystrom: Seven, live a life of purpose and passions. Challenges and defeat will help you find out what you want to live for at an early age. I say I always, now looking back, can see that being diagnosed with type 1 diabetes helped me find what I was passionate at this young age and helped me find what do I really want to do for the rest of my life? What are my skills? What do I want to do to impact the world? What do I want to do for a profession? How has that impacted my life?

Quinn Nystrom: Eight, don't let critics stand in your way. I know this is the really well-known quote of Theodore Roosevelt. Sort of the [inaudible] quote talking about it's not the critic who counts, but the man who points out how the strong stumbles or where the doer of deeds could've done them better. The credit belongs to the man who's actually in the arena, whose face is marred by dust and sweat and blood.

Quinn Nystrom: I always give the example of when I ran for public office. This is my non-diabetes example of redefining defeat. When I decided to run for public office, it was a couple of years after college and I was convinced about running for a local city council race. Somebody said, "It will cost you $2 to run for public office. We think you'd be really great at it because you've dealt with diabetes advocacy work. You're not out a lot of money to just run, you know?"

Quinn Nystrom: So I thought, "Okay. I guess I'm a poly-sci minor and I do some advocacy work, so I'll run for city council. We'll just give it a go." Gave it a go and I won a seat on the council. I loved it and it was exciting and I loved the idea about representation and more representation happening in government and it was sorta sad that me, as this younger female, was the representative.

Quinn Nystrom: Then I decided to get this idea and I had some people approach me and say, why don't I run for the Minnesota house of representatives a couple of years after this. And I wanted, again, more representation in our district and more of a strong voice, so I thought I'd be up to the challenge. So I went for that and that was not a campaign I expected. Again, the city council was this non-partisan campaign; this was this partisan campaign. It was very different, but I met these wonderful young girls along the campaign who came on with zest and passion, along the route.

Quinn Nystrom: Then, of course, we had the negative campaigning as well, right? Where people would go and put things up around town. My parents, my family, would have to go and take down these signs of us around the neighborhoods. Or you would get negative postcards that would be sent about you. Again, I was always told we should be so flattered and I'm like, "Well, they [inaudible]. That was nice of them." But they actually mailed it to my address so they made sure that I got one personally.

Quinn Nystrom: Politics was very vicious, but people and these girls on this night, on this victory party, they were so happy. They were so excited. They were so happy to cheer me on and congratulate me. As you can see, these girls were so excited. They were jumping up and down literally as they welcomed me in here. But the crazy thing about that was, I actually didn't win that election. I lost that election the girls that were there, they were at a one week later party, which was a surprise party that was thrown by some volunteers. But these girls, the view of seeing a young woman run in a rural Minnesota town, to see what impact that made to them, to see that they could have a voice and they could have representation, even though I didn't win it was still winning to them, right? I still won in their minds. That wasn't losing, that wasn't defeat to those girls in any token, even though their parents all told them that I did not win that night.

Quinn Nystrom: Number nine; you don't need a cape to be a hero. I'm gonna read a short excerpt from my book about my younger brother because I think it's really important that, like my younger brother and I grew up in the same exact household. Both with type 1 diabetes, same families, same parents, and I would say that he and I have a very different mindset and we also have completely different forms of diabetes management. He's on insulin injections, I'm on an insulin pump. Neither of us would ever swap, right? I'm gonna close with this story about Will.

Quinn Nystrom: "When Will was a high school senior, he set his mind to complete a triathlon. A rigorous training program required months of running, biking, and swimming. Will was ranked in the top group of participants. Wearing blue and yellow tee shirts with "Will Power", his triathlon support team lined the court on a bright, cool, May morning.

Quinn Nystrom: The race began at the high school swimming pool. We waved a huge Swedish flag, a nod to our heritage, as the swimmers took their marks and sliced down the lanes. After the swim portion was completed, Will jumped out of the pool to get into his biking gear. We rushed to set up stations along the bike route. Our job was to provide energy drinks and protein snacks as Will looped the bicycle course at a frenzied pace. On a curve near a small lake, I watched for his bicycle and the yellow and blue tee shirt. When he came into view, I was surprised he wasn't wearing his "Will Power" shirt. Instead, he was in blazing red, the American Diabetes Association's red rider jersey that proudly states on the back, "I ride with diabetes."

Quinn Nystrom: Will, the guy who never talked about the disease exploded out of the diabetes closet. As he flew by me, I wept. Will didn't have to talk about diabetes; he was living it. Will finished in the top five and showed himself, and everyone else, that a pancreas was not required to swim, bike, run and live life to the hilt.

Quinn Nystrom: During a recent conversation, I asked him why he made such a bold statement wearing the diabetes jersey on the triathlon. Will said, 'If there were kids watching the triathlon, living with diabetes or other challenges, I wanted them to know they can complete a triathlon or anything else. It was important that I show them through my actions rather than words.'"

Quinn Nystrom: And I just love that about Will because anytime that I'm speaking around, I always want people to know that I think people with diabetes, we can be similar in so many ways and always make instant connections, but we can also be very different and very unique in other ways of how we choose to manage our disease, how we choose to communicate about things. We can also be very successful in very different ways when it comes to that. I know that I've learned so much from my younger brother Will when it comes to that.

Quinn Nystrom: I wanna thank everybody for coming tonight and I've left some time for questions at the end if anybody has any questions. Yeah?

Audience member: How did you feel when you were diagnosed with the eating disorder? Did you feel some kind of relief like someone finally saw it? Or more of like, "No, someone found me out"?

Quinn Nystrom: Good question. I think it was a sense of relief for me because I had hidden this secret for 12 years. For some parts, I think I did know that the behavior was wrong and secretive that I had to hide it. Even if I didn't know that it was a full-blown eating disorder at points, I did know that the behavior was shameful or that I had to hide it, so I think when that practitioner did diagnose me, I think there was a sense of relief that came over me. Yeah.

Audience member: Can you talk about why it's so important for a center that treats eating disorders to have a specialty track for people with diabetes?

Quinn Nystrom: Yeah, I think the biggest reason why it's important, if you are somebody who struggles with type 1 diabetes and an eating disorder, to find an eating disorder treatment program that treats both; so the co-current illness, they have the specialty track for both is because they can really work against each other if you don't have 'em working with each other. You really wanna have a team that's completely specialized, so having an endocrinologist, having a CDE on staff, having the therapist who specialized in diabetes and understands the disease and the family dynamic is crucial. That's why Center for Change has that team.

Quinn Nystrom: Again, if you go into a typical eating disorder treatment center, they're going to put black duct tape on a nutritional label when again, somebody with diabetes is going to have to take that piece of duct tape off and look at the nutritional label. So, it's really important to go to the right place that knows how to treat both of them equally. Yeah?

Audience member: How do you manage your diabetes when you're traveling so much?

Quinn Nystrom: Yeah, it can be complicated, but I use the Omnipod. I like it without all the cords, I guess. Then I have the Dexcom G6. Then I really like for a low snack, I like the Transcend packets. That's what I like, especially coming from Minnesota, they do not freeze in cars; that's the other thing I like about them. You can keep them in cars, unlike juice boxes. That's the other thing I travel with a lot. I'm on auto-ship, actually. Yes. Yeah?

Audience member: So you have one other brother that doesn't have diabetes? And where does he fall? Is he older than you?

Quinn Nystrom: Yeah, he's 16 months older than me and then my younger brother is six years younger than me.

Audience member: Did he fear getting diabetes for a long time?

Quinn Nystrom: That's a good question. I've asked him before and I don't know if he ever feared it, but I don't know if we ever really asked him either. You know? A lot of people do ask questions about him and then I always feel bad like, we haven't asked him, you know? But yeah.

Audience member: My daughter was 16 when... My son was five when he was diagnosed; same exact thing. She was 16 when she was diagnosed, and then my middle daughter, never. She's like, "I might as well have it. I feel like I'm [crosstalk]", 'cause we're always careful of it. We had to send a tester up to college with her. She's like, "Mom, I think I've been drinking a lot and I'm thirsty," and it's like, "You're fine!"

Audience member: I just was wondering how he felt with that whole thing, but also that females tend to be a little bit more melodramatic about-

Quinn Nystrom: Yeah, yeah. No, he's never gotten it, but you never know. Nobody on either of our extended sides has it either, so.

Audience member: Yes, do your parents?

Quinn Nystrom: No.

Audience member:

Quinn Nystrom: Yeah?

Audience member: Did they ever figure out what triggered your pancreas to stop working?

Quinn Nystrom: No, yeah.

Audience member: And that [inaudible] your brother?

Quinn Nystrom: Yeah, I mean and again, I try to stay up on all the research, but it changes quite a bit. I know that there are some thoughts about is there the pre-genetic disposition? Is it during a different growth spurt? What triggers it? But yeah, I don't know if they can exactly trigger why I was diagnosed with type 1 or not.

Audience member: Would you ever get involved in politics again? Or have you thought about that?

Quinn Nystrom: I've been asked a lot about getting back involved. I really loved the policy side of it; that's the part I really loved 'cause we had this big Minnesota advocacy day on Tuesday and I just love that part of it. I most like not being in a politic system where they're like, you know, what political side you are 'cause then it's automatically 50% of people don't like you. I like just being like, "I'm not a political party. I volunteer."

Quinn Nystrom: I think it's more about what does the future hold? I don't know. I feel like I'm young and I got into it when I was young, but it's fun and I encourage people to do it 'cause I do think it's important to have more representation. It was exciting.

Audience member: How old were you when you ran for office?

Quinn Nystrom: I was 25, 26 when I ran for city council and won. Then I was late 20s when I ran for the Minnesota house. Yeah, so it was exciting, but it's a lot of work as I'm sure a lot of people have heard. At least in Minnesota, it's a part-time job if you win for the Minnesota House, but it's full-time campaigning. It's hardcore, but it's part-time, $30000 a year job if you were to win. So, the campaigning's the hard part about it. That's what you've really gotta be into, yeah. Any others? Yeah?

Audience member: Can you talk a little bit about that advocacy day on Tuesday?

Quinn Nystrom: Oh, yeah. I'm the chapter leader for T1 International; I don't know if people are familiar with them. They're a great organization who are really committed to working on the insulin affordability issue. On Tuesday we did a big Minnesota, Capital Hill advocacy day in St. Paul and there were four really important pieces of legislation that we actually got voted through the committees, which was a really big deal 'cause we've been waiting for just a committee hearing.

Quinn Nystrom: But one was an emergency insulin bill that I know some other states have gotten passed. We got that through committee. One was a driver's license requirement that had been discriminatory to people with diabetes. One is price transparency and then the last one is when insurance companies can swap drugs, or your insulin, or your test strips in the year. They would have to stick within a calendar year to keep with it, so they can't swap you. Say, "Okay, now you switch to this brand on the strips, or you gotta switch to this insulin mid-calendar year."

Quinn Nystrom: Anyways, it was a really exciting day and I get to see almost 100 people show up on the Capital steps to do this big outside rally when it's a high of 10 degrees. You know people are really committed, so that was really exciting to see and for people to be meeting with their state reps and senators because then it's like they know that they're engaged and wanna have their voices heard, so that was really important and really cool. I encourage anyone who's interested to go to T1international.com. Yeah?

Audience member: I have another question to circle back onto the eating disorders stuff. If someone out there is not sure whether they have an eating disorder or eating or not, what would you say to them? What are some next steps for them?

Quinn Nystrom: Mm-hmm (affirmative). What I would say is to call and make an appointment with your doctor. I think that would be the best thing if you're not already set up at an eating disorder clinic or working with a nutritionist. That's what I would say would be the best thing to go about. You can also always call Center for Change's line (888-224-8250). They can always be a support as well. They can call them.

Quinn Nystrom: Yeah, I would always call their provider and set up an appointment so that they can talk through. There's also great resources on the National Eating Disorder Association website too. Yeah.

Audience member: How did your eating disorder affect your diabetes? Are there symptoms or is there something like maybe, just even a friend might notice?

Quinn Nystrom: Mm-hmm (affirmative). Yeah, the interesting thing about me is I really ran under the radar. More because what people did talk about if it was discussed in the diabetes community about eating disorders, was a term that you might have heard of "diabulimia". If anybody's kind of heard that thrown around? Diabulimia really refers to somebody who has type 1 diabetes and an eating disorder, but their symptom is they omit insulin and that's the eating disorder symptom so it's called diabulimia. That would be their symptom and so you typically would see that at a medical appointment or whatever, by somebody who has their blood sugar high for a very long time and not taking insulin.

Quinn Nystrom: For me, that was not a symptom that I ever used. I always say it was more like I was a vintage bulimic, trying to put it politely, I guess. I would binge just with regular food and then I would purge by putting my fingers down and throwing up. Or I would get a low blood sugar again, be triggered by diabetes to binge, and then I would purge. So there were different ways that diabetes would trigger different parts of my eating disorder, but it was never about omitting insulin for me. So there's a lot of people in the diabetes community who think if they're not omitting insulin, they don't have an eating disorder, right? Because they think it's only diabulimia. That's why some people in the clinical medical community, in the diabetes community, got together a handful of years ago now and said, "What would be a better term that we could call it?" That's why they came up with the term called ED/DMT1, eating disorder diabetes mellitus type one, to really show the full spectrum of eating disorder symptoms, instead of just having that one symptom for the eating disorder. Knowing that people with type 1 diabetes could have a myriad of different eating disorder symptoms. Yeah?

Audience member: We got a question from someone watching the live stream and based on what you just said, I have a feeling this is going to be a very complicated answer. Please take this wherever you like, and I defer to you as the expert, but the question is, is there a definition for what is an eating disorder for someone living with diabetes? Can it be defined? Is there a textbook definition of an eating disorder for someone with diabetes?

Quinn Nystrom: Well, both the terms diabulimia and ED/DMT1 are not in the DSM5, for example, but again for me, my medical diagnosis then was just bulimia. For the medical diagnosis. So that typically what is done so it's not like then I didn't get to have an eating disorder because there wasn't a specific one for the co-occurring illness. So it's being talked about, obviously, in the medical community a lot, knowing there's a high prevalence. There's just not a medically recognized term right now in the booklet because that, I guess, is a very long process and for it to be medically recognized and then going through that process. Hopefully, that answers that person's question.

Audience member: Yeah, and it sounds like it's an evolving field.

Quinn Nystrom: It is a very evolving field with evolving research in it as well. Yep. Great. Thank you all so much.