63: Living with Type I Diabetes and an Eating Disorder
Quinn Nystrom has been a diabetes advocate for over 20 years. She is the author of the book "If I Kiss You, Will I Get Diabetes?" and is actively involved in the diabetes community to help spread awareness of the intersection of type I diabetes and eating disorders. Quinn herself struggled for 12 years with an eating disorder while simultaneously managing her type I diabetes.
Quinn's website including information on her book: If I Kiss You, Will I Get Diabetes?
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Hi everyone. welcome back to another episode of Nutrition Matters podcast. My name is Paige and I'm your host. As always I’m so glad you’re here. Today I have a really fun conversation to share with you with Quinn Nystrom, who is an incredible advocate for Type 1 Diabetes. She’s shared her story for over 20 years all around the country and today on the podcast she’s talking about her unique story of how her diagnosis of Type 1 Diabetes has intersected with an eating disorder. It’s a really interesting look at what that is like and why that comes to be for many people who have Type 1 Diabetes and it’s shedding light on an issue that a lot of people don’t talk about. It’s exciting to share this with you today. I think you’re going to really enjoy it.
Before we get into that I wanted to say a few quick words about how you can support this podcast. I really love doing this podcast. It’s been an amazing resource for my personal, my professional clients that I have one on one that I work with. It’s been an amazing opportunity for me to connect with so many fun, wonderful people. It’s been a lot of fun in general. I love when some of you reach out to me in an email and let me know how this podcast has affected you. That just really warms my heart and makes me super happy and excited and helps me feel like all of this hard work is worth it. So, I wanted to just take a moment to let you know how you can support the podcast. Of course there’s the ability to donate. And some of you have done that and for those of you who have I greatly appreciate that. I do recognize that sometimes donating financially is a little bit tricky and I know that if you listen to podcasts you get hounded for donations all the time so I understand where many of you might be coming from. For those of you who haven’t had the chance to donate and who haven’t had the chance to leave an online review what I want to ask you to do is, if you could just take a moment to pause the episode, hop on your podcast app, whether it’s on your computer or on your phone and search Nutrition Matters, pull it up. Click on ratings and review and leave a nice review for this podcast. That helps me a ton. Let me tell you how. In one respect, it helps to help this podcast grow because the more reviews we have the more visible it is in a search on iTunes. That’s one great thing it helps to get the word out. Another reason that it’s helpful is sometimes I get a little exhausted with doing this and I question whether or not it’s worth it and it really in truly means a ton to me when I read those reviews and when I can see that what I'm doing and this hard work that I'm putting into this podcast is worth it for people out there. It helps my morale. It helps me continue and helps me feel good about what’s going on. It’s something small that you can do to definitely make a big difference in my life and my ability to keep going through some of the drama that can come with podcasting. I really appreciate any of you who have already done that. Just so you know every time I read a podcast review I just do a little dance inside. It’s really a lot of fun. If you have a moment to do that I would greatly appreciate a nice review on iTunes. Another way you can give back is simply sharing this podcast with your friends and family or anyone else who you think might benefit from this type of message. Those are three ways: you can donate, you can leave a review, or you can get the word out to friends and family. All of those things help and I'm so grateful for all of you. I'm sure all of you have done one of those things in your time of listening so I really appreciate that. In the meantime, I’ll continue to be putting out great content that is hopefully helpful to you and hopefully encourages you on your path toward a healthier and happier self both on a mental and physical level.
So, with all of that introduction let’s get to talking about Quinn. I wanted to introduce you to her. Her name is Quinn Nystrom and again like I told you in the beginning, she spent the last 20 years of her life sharing her story of living with type 1 diabetes to audiences all across the country so she has actually spoken as the national youth advocate for the American Diabetes Association where she spent an entire year as a teenager traveling across the country speaking at Diabetes camps, convention halls, the White House and even the US Congress. She’s spoken to over 300,000 people across north America and in 2014 she published her first book called If I Kiss You Will I Get Diabetes? She’s just a wonderful advocate for type 1 diabetes. This is her world. This is her life. This is what she does. She talks really candidly in this episode about her experience with type 1 diabetes and her work to create a healthier relationship with food with that diagnosis and her body. I think this is something, obviously if you know someone with type 1 diabetes this will be especially interesting to you. But, if you don’t happen to know someone with type 1 diabetes I think it’s still really fascinating to understand how a diagnosis that you think wouldn’t have anything to do with eating disorders, just to get a little glimpse into why this can really create a rocky relationship with food and your body. I really think you’re going to enjoy this. Thanks again so much for all your support and I am excited to share this episode with you so let’s get to it.
PAIGE: Quinn, thank you so much for joining me today on Nutrition Matters Podcast. I’m so excited to talk to you
QUINN: I’m happy to be here. Thanks for having me, Paige.
PAIGE: You’re welcome! So, I’m just so excited to hear your story. And shed light on such an important issue. So, let’s just get right on into some of these questions. Tell us about setting the stage before you were diagnosed with diabetes give us a brief outline of what life was like with food, and weight, and body image as a young kid.
QUINN: I’m born and raised in northern Minnesota so I grew up in a small town. I was a competitive figure skater. I learned to skate on the lake in my parent’s backyard at the age of two.
PAIGE: So dreamy.
QUINN: Yeah, it’s very dreamy, right? My two brothers were hockey players. And probably even before I could run I could skate on a lake. And so…
PAIGE: That sounds like it’s from a movie.
QUINN: Yeah, it’s sort of a hopefully a better version of The Cutting Edge.
PAIGE: Yeah! I love that movie!
QUINN: So, I grew up figure skating and then that was my sport. So, I started competitively figure skating in the 6th grade. When I was twelve years old I would say are my first memories of really noticing my weight, my body, and how that effected, I’ll say, my success. I was a little bit taller. I was a little bit a broader build if you want to say. And I became very self-conscious. You know girls in the locker room would talk about their weight. To be a better spinner or to be a better jumper and I was not overweight by any means but I think that’s when I started to notice it. And girls would talk about different things they would do and those are really my first memories of thinking that I was different or that I had to do something different to get people’s approval or to win. I started doing some of those crash diets to believe that that would make me more acceptable in the figure skating community.
PAIGE: And that’s one of those sports that’s known for being really focused on the body shape. And especially if you’re going to be doing it, what do they call it? in couples? Is that what they call it?
QUINN: Yes. Well, I actually remember being a young girl, Paige, and saying I’d love to be a pair skater, right?
PAIGE: Oh pair! That’s the word.
QUINN: And they said you’re too big. And I’m thinking…
QUINN: And I look back and I’m thinking I’d love to be what I was as a little girl. But, what’s so sad is it’s like there was that belief, right? And it was always very matter of fact. It puts in this belief in your mind “something about me is wrong. I’m not good enough” or “is there something that I can change or manipulate to be more accepted in this community?”
PAIGE: Meanwhile, everybody else is talking about it and stressing about it. And sharing whatever disordered things they’re doing. And then you’re getting the message “oh, you’re too big” that’s gotta be really difficult.
QUINN: Yeah. Especially, I look back and think as a twelve-year-old girl, you’re not even old enough or maybe mature enough to know that sort of wise mind that I learned later in my life. You know, if you’re thinking about this logically Quinn is that true or false. Is this a healthy or an unhealthy statement? And looking back I think that wasn’t even a true statement. Or the correct thing for adults who I respected to say to young girls. But that was the culture of figure skating and other girls that I skated with and other competitors. That was the way it was so I remember the school counselor bringing me to the office because friends of mine had told the school nurse that I was doing these saltine cracker diets or whatever I was doing back then. And that’s when the nurse called my parents and said we think she has an eating disorder. And again, this was prior to me ever being diagnosed with type 1 diabetes.
PAIGE: Ok. So, talk about that. When did you get diagnosed and what was that like for you?
QUINN: So, I was diagnosed. When I was first brought into the doctor for these eating disorder symptoms I was twelve years old. I’m from rural Minnesota, small town the doctor was sort of like well, she's sort of unhealthy but just make sure she eats dinner.
PAIGE: This was for the eating disorder intervention?
QUINN: This was for the eating disorder. It was our pediatrician.
QUINN: So, my parents had the best intentions. They said ok we’ll monitor it. And then about a year later I was thirteen years old, I was in the seventh grade. My little brother Will had been diagnosed with type 1 diabetes 2.5 years or so prior at the age of five. I was brought into the same pediatrician’s office in Minnesota and told you are being diagnosed with Type 1 diabetes. And I think most people as a thirteen-year-old girl. We can sort of remember back, Paige, and think oh my gosh we were awkward. We were uncomfortable. All I wanted to do was fit in. Look like everybody, act like everybody, talk like the rest of my friends. wear the clothes they wore. I didn’t…
PAIGE: Yeah, you do not want to be different
QUINN: You do not want to be different, right? I think the toughest thing about getting diagnosed with type 1 diabetes is, and especially at a formative age like that, is in a split second you are being told without any choice of your own, this is your new life. And the moment you walk out of this office from this serious diagnosis, your whole life is going to change. Furthermore, that doctor said to me, and I’ve heard this story several times now after. Of other people who got diagnosed with type 1 diabetes. this doctor said to me, “Quinn, I know you lost a lot of weight because of the undiagnosis of type 1 diabetes. As soon as you start taking insulin, from this moment on, you’re going to gain all that weight back. “I’m sure you can imagine as a thirteen-year-old…
PAIGE: So, panic as a thirteen-year-old.
QUINN: And then from that moment before you even take that first shot. You’re equating an insulin injection with me gaining weight.
QUINN: But the hard part is I'm being told you have to take this insulin. That’s going to be your life support every day of your life. That’s the tough part.
PAIGE: Yeah. So, we’re going to get into talking about your story and your advocacy and your work and all that. I just want to, before we get into all of that. Do you have anything you want to say to sort of make sure that we’re approaching this whole conversation sensitively. Like, some disclaimers or warnings or some foundation that you like to lay typically when you talk about these things.
QUINN: I think being in the diabetes advocacy world for as many years as I’ve been in it. I think often times people think we shouldn’t talk about this topic of type 1 diabetes and eating disorders because it’s going to give people an idea, right? It’s going to make them think of something to do that they would not have.
PAIGE: There’s that, right? I think we could be accused of doing that in this conversation.
QUINN: And, to me, the biggest reason, Paige, why I chose to speak publicly about it was because I didn’t see it being spoken about. So, for so many years I felt so much shame. Not only living with diabetes, which I think is misunderstood, but I felt a lot of shame on the eating disorder. That I felt like if I didn’t speak publicly about my own personal story that I wasn’t helping this community that I was a part of within the diabetes community. And I think any medical study will show you that especially young women with type 1 diabetes are predominately at a higher risk for getting an eating disorder. I also say that I think type one and eating disorder we often hear it termed diet bulimia. That was never something that I related to about insulin manipulation. I think a lot of people with type 1 diabetes. There’s different forms of it and that’s why I always think that describing it in the DSM 5 medical term of ED DMT 1 is more accurate because it is a medical diagnosis and I want people and parents and healthcare professionals to know that.
PAIGE: And for it not to be sensationalized or irresponsibly talked about is really important. But we don’t want to let the fear of maybe saying something in some way that might bother someone, or offend someone, or make someone upset. We don’t want to let that fear get in the way of us trying to be part of the solution. That’s how I see it. I think we’re going to try to be brave here by having a conversation that’s a little but touchy, a little bit taboo but in the name of creating awareness and helping parents and other family members to be aware that this is something to watch out for and this is a really serious eating disorder. Don’t you think? Is that fair to say or would you add something else?
QUINN: No. I mean, I think it’s a very serious eating disorder with this cooccurring illness and any medical study that’s been done, again, shows that you are at such a higher risk having been diagnosed with type one at a young age.
PAIGE: Let’s talk about why. So, the reason you’re at a higher risk for developing an eating disorder is now you go from being this intuitive eating child where you just kind of eat what you want, you go play with your friends, you hang out you do stuff and now all the sudden you’re told every single bite of food that goes into your mouth needs to be counted so we can dose insulin appropriately. Your parents are all preoccupied with trying to figure out this new system. You’re feeling stressed out about being different and being bogged down with all these different food rules and ideas in your head. Now, all of the sudden you’re fairly obsessed with food and it’s kind of medically induced, right?
QUINN: One hundred percent. I try to describe it to people again. You walk into this office as this thirteen-year-old girl just trying to fit in and be like everybody else and you walk out of this thirty-minute appointment, let’s say, being told this is your new life and in order to simply, I know it sounds morbid but, simply to stay alive I’m going to have to, for the rest of my life, until a cure is found, count every single carbohydrate that comes into my body. Not only that I’m going to have to dose when my hormones go crazy. Specific times of the month. I'm going to have to sort of become this min mad scientist having to now put insulin into my body which this doctor has told me is going to increase my weight. So, you’re going to have to have a hyper focus on food, numbers, weight. And I think to compound on that, unfortunately, in our society in the US, a lot of times when I hear about diabetes what I see on the news is they just say: diabetes. And we see shots of people overeating at a food court are severely overweight. Or, I actually have a file on my computer of the photos that I see of people on social media with diabetes memes. And they honestly believe that you can just eat your way into having diabetes. So, I think all those things, right? Just then just having diabetes and an eating disorder it’s like living with this double shame sandwich.
PAIGE: Yeah. So, Quinn there might be some people listening who. And for anyone who’s interested in learning more about diabetes I did a whole podcast episode about it. Let’s review really quickly what type one is because what you’re hitting on here and alluding to is the fact that there’s so much misunderstanding about what causes it, and sugar, and eating, and bodyweight and. Let’s just make sure that everyone listening understands what type 1 diabetes means.
QUINN: type 1 diabetes makes up they think roughly 5-10% for the t29 million Americans who are living with diabetes. But type 1 diabetes is an autoimmune disorder which means there’s nothing that myself or my younger brother could have done to prevent the diagnosis. Type 1 diabetes really at its core is that our pancreas for still reasons unknown decided to stop producing insulin. So, the reason why there’s this obsession with the food counting is then we’ve had to become our own pancreas by manually inserting insulin for any blood sugar fluctuations or any sugar that’s put into our body. And that’s why our life support is either multiple daily injections of insulin or wearing an insulin pump like I do myself.
PAIGE: Thank you for explaining that. So, type one is very different in terms of the fact that your body really just doesn’t make insulin anymore so you have to provide that. In order to know how much to provide your body. Not too much not too little. That’s where the counting carbohydrates comes into play. As we talked about, why people are at higher risk for developing eating disorders with a diagnosis with type 1 diabetes. Hopefully, that makes a lot of sense. You really have to count. You have to be aware of the food that’s going into your mouth. So, it’s almost like you’re put on this pretty intense diet that’s obviously important in saving your life, and a big deal but there are some side effects for the right personality, the right genetics, the right. All of these environmental factors coming into play to create a higher risk for developing an eating disorder. Anything else you want to say just before we get into the meat of this. It is a sensitive topic because we want to make sure we’re not “giving people ideas.” But, don’t you think anyone with type 1 diabetes has probably already put this together?
QUINN: You know, I think. I’ll never forget the first time that I was asked to speak publicly on this topic. It was in a breakout session at a young college student’s conference. A Students With Diabetes Conference in Florida. And I thought oh maybe five people will come to this presentation. And I will never forget the room was packed. And it wasn’t just with women it was also with men. After just simply telling my personal story of what I’d gone through because again, at all these conferences as this national diabetes speaker I didn’t hear people talk about this substantial risk of getting an eating disorder. I thought I was the only person in the world that struggled with this. And somebody asked me to speak about it, I did. The number of people in that room who came up to me afterword saying they struggled with disordered eating or that they believed that they were struggling with an eating disorder. And what was devastating to me, Paige, was they had suffered in silence, very similar to myself, for years. Because the shame that they felt from being diagnosed with a chronic illness years prior, of diabetes, that they had no choice in getting.
PAIGE: Well, I'm so grateful for the work that you do. And we’re going to get there and I'm sure that’s going to come into play when you’re explaining your story. We left off on what happened when you got diagnosed. What happened from then on for you?
QUINN: After I walked out of that room at thirteen I think I was shell shocked. My younger brother had been diagnosed with type one. This doctor had said there’s really no other chance that Quinn and her older brother will get diagnosed with type one. Being in that room at thirteen and getting that diagnosis, I was so stunned I didn’t believe the news. The first question I asked the doctor when he said do you have any questions I said can I go to the junior high dance tonight. Because really, I just wanted to know could I still be this normal kid like the rest of my friends. But I went through this one-year process of being in denial, being very angry. I didn’t want to talk about living with diabetes. I didn’t want to talk about what I thought my future was like. I was devastated. Until my mother had heard about diabetes camp run by the American Diabetes Association down in Hudson, Wisconsin. She told me that she was going to send me there. And she said it would be great for me to be around other young women who had type 1 diabetes. I obviously told her I would not go and she packed my bags and I headed to camp Needle Point in Hudson, Wisconsin. And even though it was a bad name it was the first time I…
PAIGE: Camp Needle Point. Sorry. It just hit me. I get it.
PAIGE: So cheesy.
QUINN: It’s terrible, right? And I thought, oh this is going to be awful we’re going to have to talk about needles and our pancreases for seven days in August. But my mother said you’re going and I just thought my life was over even more. And I went this camp and it was honestly the first time I felt like it was going to be ok. I was with other girls my age, who got up every day and it looked like just any other summer camp but we all lived with type 1 diabetes. It showed me that maybe I didn’t get the choice to get type 1 diabetes but I was the only one who could decide how I was going to react to that diagnosis. And that was the choice that I was going to be able to make from that day forward. And that was when something clicked in my mind as a fourteen-year-old girl that said I will do whatever I can in my power, this is a small-town girl in Minnesota, to speak out about what it’s like to live with a chronic incurable illness. So, that camp, Camp Needle Point is what I believe saved my life.
PAIGE: Wow. I think that moment you just described is something most people can relate to. Where it’s like, something really hard happens and you grapple with it and you have to go through sort of that grief process and then at some point you realize, “Ok, I’ve done my grieving. Now, in order for me to move forward it’s up to me.” That’s really powerful. I’m sure we’ve all been there in one way or another in our lives.
QUINN: I think, especially being older now. You look back, and as tough as you think your own life is, everybody sort of has a cross to bear in their own life. And for me, it was getting diagnosed with type one at a young age. But, we’ve all been at that point where we’re the only who can make the choice about our own quality of life moving forward. No matter what happened in the past to us.
PAIGE: Absolutely. So, tell me about what happened next. I think I know that you started getting involved with being a teen ambassador with the American Diabetes Association is that right?
QUINN: Yeah. I came home from that camp and it was sort of a coming out party for me. I wanted to go into classrooms and service clubs in my area and talk about living with type one and have people ask me sort of any question they had about what they thought about diabetes. That brought me to applying to be the national youth advocate for the American Diabetes Association. They choose one young person a year to represent the ADA, travel the country and advocate on behalf of them. I was chosen at the age of sixteen. That was a one-year term and I flew to the White House I flew to Capitol Hill. I went to other diabetes camps, to expos, talking about my life with type one. And that’s really what started me on this trajectory of speaking and writing about my very personal experience of what life had been like living with a disease.
PAIGE: So, you started doing all this advocacy work and just telling your story all the time. Meanwhile, from what I understand, meanwhile there are things underneath the surface of your own journey and process with figuring out how to navigate this really tricky situation. So, talk a little bit about whatever you’re comfortable, in terms of your own struggle with an eating disorder at the same time struggling with a diabetes diagnosis.
QUINN: It was difficult, obviously. I had had issues with struggling with an eating disorder prior to that diagnosis of type one. Now I had type one, and again this was back in the 90s the early 00s, where the diabetes education back then was: you took an insulin injection sort of on these specific hours. You had to eat a certain amount of, I think they called it choices back then. So, I had five choices at breakfast which would equate to like 15 grams of carbs. So, at breakfast…
PAIGE: Was it exchanges?
QUINN: Yes! Yes. Choices or exchanges they would call it. Actually, my mother, it’s so funny. She still has the sheet of paper taped up on the kitchen cupboard for my little brother and I, of what our choices and exchanges were and what hour we had to eat them. Here you are. You are told you have to do this to stay alive and you’re struggling with being a teenager, with hormonal changes. With just being a teenage girl. But now, the other flip side of it was. Now, I'm speaking in service as a diabetes advocate. And in the diabetes community, I struggled because I felt like any speaker I would hear would paint this very sort of perfect picture of living with diabetes. Any celebrity who would speak about it they would say “oh, I can climb Mt. Everest because I was diagnosed with Type One” or “I’m this Olympic athlete and I can just handle my diabetes so great.” I would always sort of internalize this thought, Paige, like Type 1 diabetes is really tough! Then on that other side I was really struggling with my weight and with eating and with having to calculate everything every hour of the day and I never got to take a day off. It almost became this thing of having to feel like I was hiding what my thoughts were, or how I felt. Because I felt like I had to play this part to be accepted as a National Diabetes Advocate and Speaker. Which was very lonely.
PAIGE: I can totally see that. Sort of like if you admit that you struggle or that there are struggles associated with this disease, that you’re not painting the picture that they expect you to paint. That you kind of, need to be strong and advocate for you know “life can be totally fine” type of message. Is that what you’re saying?
QUINN: One hundred percent. I remember this was actually just a couple of years ago. There is, and I won’t say the name of the company, but a very large pharmaceutical company, diabetes pharmaceutical company that has a program called the A1c Champions. They have a speakers’ bureau and they’ll pay you to speak. And I was offended because in the application they made you give your medical record of what your A1c was. The A1c had to be lower than a 7.0. Now, I've never publicly said what my A1c was because I think that it’s very shaming. It’s very similar to asking what someone’s weight is. An A1c is though…
PAIGE: Just explain what that is just in case someone doesn’t know.
QUINN: people especially with type 1 diabetes as a blood test. Usually at your regular diabetes check up just to see what the average of your last 3 months of blood sugars were. So, there is a percentage given. The ADA I think now has it at 7.5% or lower which they say is this optimal level.
PAIGE: And just to clarify. When you get your blood screened at a wellness check and they check your blood glucose that’s a snapshot of what your blood sugar is that day. But, the hemoglobin A1c test that you’re talking about here Quinn is when they measure the sugar coating on your hemoglobin. Like you said it gives off a percentage of what it is. So, that is a test that they use to diagnose diabetes, to see hey what have… Since blood cells live for three months, what has your blood sugar been on average over the last three months. The percentage has a corresponding average blood sugar. It’s a way to diagnose diabetes but it’s also used with diabetes management to say, hey how are you doing with managing your blood sugars. How is the medication regimen we’re doing working for you etc. So, it’s something that a diabetic will have checked on a regular basis.
QUINN: Yeah and it’s something you obviously want checked and want discussed at your appointments. But I remember when, because I've done all this national speaking, I didn’t even want to turn in this application because I thought how shaming to say I'm not qualified to speak about my experience based on this one test. Though it’s very important.
PAIGE: It’s kind of like say, “you can only speak if you weigh under such and such amount” like weight. Right?
QUINN: Exactly! One hundred percent!
PAIGE: It’s like hello, um?!
QUINN: That’s exactly what I thought. I thought, and again, I've seen, and I'm not being disrespectful. I guess I'm just being very honest. I see other diabetes speakers and bloggers and they are always posting about their A1c and I’ll say, my A1c is, I discuss it with my medical professionals and I certainly have goals for myself. But to have that as a qualifier. I think what the struggle is, here you are living with it. Obviously, I've struggled with an eating disorder, and we are going to just judge people’s qualifications based on a number. Which to me just meant we’re further fueling this good diabetic, bad diabetic, good food, bad food, good weight, bad weight. And again, just fuels that shaming that we have. And I just didn’t relate to that. I didn’t want to be a part of it, you know?
PAIGE: Yeah, and I could see that just being another thing to add on to the giant pile of things that you’re like yep not good enough for that, not good enough at that, and I'm just kind of making the whole disordered eating, eating disorder thoughts just get even harder to cope with.
QUINN: Mhm. Absolutely.
PAIGE: So, talk a little bit, what your comfortable, talk a little bit about what your eating disorder in conjunction with diabetes took form as. Both, maybe not as much about behaviors just about thoughts. What was it like on a daily basis?
QUINN: I think for me it was. Again, if I had ever heard anything about diabetes and an eating disorder it was always in the form of this diet bulimia and this restriction of insulin, this high A1c. I think being this young national youth spokesperson for the ADA, I felt like that A1c has to be perfect. My numbers have to be perfect. I have to have this obsession with carb counting and with all these numbers. I have to have people always think my numbers are perfect.
PAIGE: So, it’s like, if I have to have diabetes I'm going to be perfect at having diabetes.
PAIGE: Almost like that.
QUINN: Because that always seemed to be the litmus test. That was verbiage that was always used.
PAIGE: Right. That is totally the rhetoric of: you’re compliant, you’re not compliant, you’re a good diabetic, you’re not a good diabetic. Like you’re saying. That is how the medical world tends to approach it don’t you think?
QUINN: Yes. I think it’s devastating. I think it’s devastating for people who, they’re exhausted with having to live with a chronic illness they had no choice in getting and they’re doing the best dang job they can. I think it’s why I wrote the chapter in my book about the diabetic food police because. Still to this day. On a weekly basis because obviously I'm very public with living with diabetes. People, no matter what’s on my plate, Paige, if it’s a bun, a piece of bread, if its spaghetti, especially if it’s a cookie. Even if it’s diet Mountain Dew people will say are you sure you should be eating that, Quinn?
PAIGE: Oh, my goodness. So, yeah if we think it’s hard to have our friends talk about food so much or talk about their weight so much try adding on having diabetes as a diagnosis. Then, all of a sudden, everyone’s policing your food whenever you’re trying to just have a fun social time with them. That’s got to be so hard. I know I hate that feeling of people watching me and judging me while I eat.
QUINN: Well, because I think living with an eating disorder, you are already a full-time police for yourself. You are your own worst critic. You say a lot of very negative thoughts to yourself about what you’re eating, your activity, about your weight, about clothes, how you look. And now, you compound that with what people, and again, I believe they have a, I don’t think they’re saying it maliciously to you. But, they believe they’re trying to help you. And, so, it’s very awkward because you’re sitting at this big table and then everybody’s looking at you. So, I think for me a way that it manifested was then I believed I could use diabetes as an excuse to not eat things, right? And I could get out of it by saying oh I have diabetes I can’t eat that. Which is not true. but I think my disorder then just sort of raged with inside myself. I was so insecure. And in a way, I think I was exhausted and burned out from having to feel like I had to constantly justify a piece of bread that I was going to eat.
PAIGE: It’s almost like. You do this cost benefit analysis in your head. Either I eat in front of people and they hound me about every bite or here’s this other option. I just avoid the whole situation by not choosing to eat around people or not having to deal with that conversation so I just won’t choose to eat that and I’ll just use the excuse of well I have diabetes. I can totally see why that developed for you. That’s so exhausting.
QUINN: I think it just became this very bad cycle for me. That just continued for years. Without ever.
PAIGE: So, you were someone who would still dose your insulin but just wouldn’t eat adequately.
QUINN: Mhm. Yeah. To me, I almost looked at. You know, I had an insulin pump starting at seventeen. For me, I wouldn’t “manipulate the insulin” in the sense of eating more for the insulin I was given. I would give the correct dosage but I would limit the amount of insulin I was giving on a daily basis. So, I would restrict what I was eating.
PAIGE: To match that.
QUINN: Yes. Because I thought I need this perfect A1c but I have to be this perfect diabetic. If I'm going to speak about it I need to be respected and that’s.
PAIGE: Right. That’s a lot of pressure.
QUINN: Yeah. I felt a lot of pressure and I felt like nobody cared to hear what I was struggling with.
PAIGE: So, as a teenager, I've heard you talk about how a boy asked you if he could kiss you. Do you want to tell that story? Do you mind?
QUINN: Yeah. Well, I wrote a book title about it, right? Here I am, a senior in high school, you know. Going to my senior prom and I remember being a high school girl and having a crush on this guy and he was going to lean in for the kiss and before he kissed me he said, “if I kiss you, will I get diabetes?”
QUINN: Right. You’re like oh my gosh my life is over. And I remember saying, like, diabetes isn’t contagious. But, I think there’s just so many misconceptions. And this is a smart guy. I mean, now he’s a, this is sort of sad, he’s a priest in Ireland now. My parents say I made him, I drove him into…
QUINN: Yeah, celibacy. I think there’s just all these misconceptions about diabetes and I obviously was flabbergasted; but I wrote this book because it was like, all these people ask these questions about what your life is like. Or they say these things and you’re like that’s factually not even true!
PAIGE: What else? Do you have any other kind of things that stand out in your mind of misconceptions people have?
QUINN: I remember speaking, I think it was just over a year ago, at a very large university. One of the largest in the country. I was doing a community talk about diabetes and a gentleman raised his hand in the middle of my speech. And I described type one and type two diabetes and he said, “well clearly by the photos in the PowerPoint, when you were a competitive figure skater, you were very thin and athletic, and now you’re in front of us. What lifestyle choices have you made today to make you overweight?”
PAIGE: Oh. My. Goodness. How did you come out of that one?
QUINN: Luckily, I guess, I wasn’t jailed that evening, right? So, my reaction, at least, I could think before I spoke out loud.
PAIGE: Wait, luckily you were in jail?
QUINN: No, I’m saying I wasn’t jailed that evening.
PAIGE: Oh. Oh. Oh.
QUINN: I think what our natural reaction would be to somebody saying something so offensive to us. But, I think that shows how there are some people. I want to believe it’s the minority, believe either I ate something that caused my diabetes, or I did something that’s caused it. Or that I’d done something for the last 18 years that has made me a bad diabetic. And what I answered to this man was, I said my legitimacy as a speaker or as somebody successfully living with type one has nothing to do with waist circumference.
PAIGE: Good for you.
QUINN: And I’m grateful for every day that I wake up and I'm alive and I'm thriving with type 1 diabetes and also having an eating disorder.
PAIGE: Can I ask where you are these days. With coping with the eating disorder? How are things going for you?
QUINN: I always say that I don’t believe that recovery for me was a singular event. That it’s a daily choice for me. Because, after years of struggling with an eating disorder, I chose to get help at the age of 24, to go into treatment. I was in treatment for several years in inpatient and residential. I recently turned 31, and again I still believe it’s this daily choice because living with type one, again, thirty minutes before this call I had lunch with my brother. I hosted him for lunch. I needed to check my blood sugar. I had to see what my carb count was, dose my insulin. And I don’t go a day, probably, without thinking about all that because I have to to successfully live with type 1 diabetes. I think certainly it’s these thoughts but because of the wonderful help and cure that I've gotten. And I think also about being honest about my story, it’s helped me say this is a struggle but I know what I need to do to get help or to get support so that it doesn’t go into the dangerous levels that it did in my past where it becomes an hourly, a minute by minute obsession of mine. Where I believe that is the only thing that is important. That is my appearance, my insulin dose and how I think others look at me.
PAIGE: Well, congratulations. That’s really awesome. And I’m really so impressed with you. We talk a ton on this podcast about intuitive eating and letting go over rigid diet rules and connecting with your body and all of that. So, I didn’t prep you for this but what you just said made me want to ask this question. Have you found a way to make intuitive eating work given your circumstances and given the fact that you do have to count carbs and dose insulin? Do you have any thoughts in that regard?
QUINN: Yeah. Something that I learned in treatment. They had us, obviously, do food challenges. I was in a diabetes specific group. We would have dessert together every time we went out. And obviously there’s a lot of people who think diabetics can not eat sugar they can not have a dessert, right? This group would teach me, like, ok no. A carb is a carb. It doesn’t matter if it’s a sweet, you know, chocolate chip cookie, or if its spaghetti, or a piece of bread, right? A carb is a carb and that is not something to be afraid of or think that equates you to being bad at living with diabetes. And so, I think those lessons and building up that support system taught me that I have to look at food as fuel, and food as a prescription sort of just like I look at a dose in my insulin on a daily basis. I need to have a healthy perspective and a healthy balance with anything that I choose to put into my body.
PAIGE: So, sort of what I'm hearing is like leveling the playing field. Treatment helped you realize that all foods can fit. It’s just about knowing how much you’re eating and about balancing it and feeling, I guess. Just, you don’t need to approach diabetes with a disordered mindset is what you, what I'm hearing you say, right?
QUINN: One hundred percent. I think if you have a great medical team around you who understands type 1 diabetes. they understand eating disorders, right, in this population. Maybe back in the 90s they had a different viewpoint about food and diabetes. But, nowadays, the best education is a carb is a carb. And there is not one food that you can not have. It’s more about. I say to people. People say well you can’t have that piece of cake or something. And I’ll say well, I probably shouldn’t eat that whole piece of cake or a whole cake but neither should you with a healthy pancreas.
PAIGE: It’s almost like. I just think it’s. I always like to tell my diabetic clients and patients that it’s not really a special diet. It’s just sort of a healthy, well balanced diet that all of us can try to aim for. By diet I don’t mean fad diet I just mean way of eating.
QUINN: One hundred percent. That’s what I try to tell people. Is that, yeah, I shouldn’t probably just sit down and eat a dozen cookies for dinner but neither should my friend who has a healthy pancreas, right? But if I’d like to have a cookie or two cookies or if I love red velvet cake so I have a red velvet piece of cake on my birthday that’s not bad, right? I need to obviously know what the carb count is so I can do that insulin dose. But, that’s not bad. That doesn’t make me a bad person or a bad diabetic or bad at the eating disorder. I think if we have those honest conversations I think that we can try to lift this shame off of people who not only suffer with type 1 diabetes but also with a cooccurring illness of an eating disorder. I think that’s why I'm looking forward to speaking out about it more this year with being a national diabetes ambassador with Center for Change.
PAIGE: Yeah, so, tell me about that. Tell me about your plans for the upcoming year.
QUINN: I’m excited to be able to speak more publicly about this because, again, anytime I’ve spoken about it there’s a lot of interest. I think there is a lot of people in the diabetes community who have struggled with this who haven’t spoken publicly about it. I got lined up with Center for Change last summer. We had several conversations about people who live with type 1 diabetes and an eating disorder. They’re women specializing in treatment facility out of Utah so they named me their national diabetes ambassador and so, actually, next week I'm traveling to Nashville with their cofounder Dr. Michael Barret. We’re going to be putting on a community event, a second event for clinical professionals to talk about what this cooccurring illness is like and how you can help people with this. I think we’re in Houston in June. I think really just speaking publicly about it and letting people know that this is a very really occurring illness but that there is help for people who struggle with this.
PAIGE: That sounds so great and so needed. I'm really excited to hear more about how all that goes. So, tell me and the listeners how they can keep in touch. Talk about your book. Talk about any social media. Your website or how people can connect if they’d like.
QUINN: Probably the easiest way people can connect with me is if they go to my website which is quinnnystrom.com.
PAIGE: And I’ll link to that in the show notes, so.
QUINN: Perfect. Usually there’s a lot on ns in a row so. I blog for a couple of different sites: diabeticlifestyle.com about just life with diabetes. Then I also do a monthly blog for Center for Change that they have on their website but then I also link to it on my own site as well. And then people can find me on Facebook, Twitter, Instagram under my name as well. Then if people are interested in buying my book which is mainly about life with diabetes but I do have a chapter about living with diabetes and an eating disorder you can find that on my website as well which is, as you had said earlier, is about a high school love and other things of If I Kiss You Will I Get Diabetes.
PAIGE: Love it. Ok. So, just wrap up the conversation the best way you can. Just tell us what do you wish. I guess let’s talk to people like you. Let’s talk to your fourteen-year-old self. What do you wish young people with diabetes knew?