Diabetics Doing The Diabulimia Hotline with Erin Akers

[00:00:00] Rob Howe: Hello everyone, Rob Howe here, and welcome to the Diabetics Doing Things podcast. Just wanted to let you know that if you've been listening all the way to this point from the beginning, you're inching ever closer to hearing over 1,000 years of living with type 1 diabetes. Now, certainly there are some similarities in how we all deal with the disease, but I find it super rewarding to dig into the tactics, tips, mindsets, and insights that make us all different. If you hear something new, interesting, or polarizing, drop me a line. I'd love to discuss it. Holler at me on Instagram or shoot me an email. Okay, let's get back to the episode. Hello and welcome back to another episode of Diabetics Doing Things. We are telling the amazing stories of type 1 diabetics from all around the world. And my very special guest today is Miss Erin Akers. Welcome to the show.

[00:00:46] Erin Akers: Thanks, Rob. Thank you so much for having me.

[00:00:48] Rob Howe: And Erin, you are calling from Seattle, Washington, correct?

[00:00:52] Erin Akers: That is true. Well, the rainy capital of the United States, although we are getting some sun today.

[00:00:58] Rob Howe: Hey, you know, the Northwest is an amazing place to be in the summer, so I'm a little bit jealous. It's like 105 degrees right now outside in Dallas.

[00:01:06] Erin Akers: Oh, God. Oh, I'm actually from Texas, so I know that heat, that dry heat, but I am very happy to be in the Pacific Northwest this summer. It's beautiful right now.

[00:01:17] Rob Howe: Well, let's dive in and kind of chat. For those of you, I know that you heard the podcast. I believe, I'm trying to remember, Rebecca was my guest from New Zealand.

[00:01:32] Erin Akers: That's right, yeah.

[00:01:33] Rob Howe: I know that that's sort of how we got connected was through her. So let's kind of just start from the beginning. Tell us your diagnosis story and how you kind of came into the T1D family. And we'll kind of go from there.

[00:01:47] Erin Akers: All right. So the type 1 diabetic family is both literal and figurative for me. My brother was diagnosed as a type 1 diabetic before me about two weeks. and when I started to show some symptoms of being sick immediately just with the flu actually immediately brought me in though to have me tested she had a hunch that something might not be right and since my brother had just been diagnosed she was very skittish and they tested me and my blood sugar was only in the 200s and so they actually caught it before I had kind of full-blown symptoms I wasn't, you know, drinking a lot. I wasn't feeling ketones yet. And I got diagnosed early. And so I kind of got caught on a whim because of my brother. And I was brought into the diabetic family. And so I was 10 years old at the time. And so that was 18 years ago for me that I was diagnosed with diabetes. And at the time, the education of diabetics was really different. It was very much about being obsessive about what you eat and being obsessive about your numbers. And that's really what I honed in on in my diagnosis was the obsessive aspect of diabetes control for me. And it led me down a very dark path with obsession around food. And that's kind of how my diabetes diagnosis journey took me into the advocacy world of diabetes and how I ended up a diabetes advocate and then eventually opening up my own nonprofit for diabetics. is because I thought when I was diagnosed, the way that they taught diabetes education was not the best way to teach a 10-year-old how to kind of have a relationship with food and have a relationship with insulin. And so that's kind of how my diagnosis story got started.

[00:03:35] Rob Howe: Well, and I definitely want to focus on that because that's a big reason why, you know, when we're talking about, you know, diagnosis and, you know, the different experiences that people have, I realized very early on in the diabetics doing things process that where you're diagnosed and the rhetoric that's communicated to you by your doctors at your diagnosis is extremely important in your development, especially over the first few years with type 1. So, A, I want to talk about what it was like to be diagnosed within the first two weeks from your brother's diagnosis. So like everyone's like already sort of barely recovered from that.

[00:04:20] Erin Akers: It was a hard month in the Acres household for sure. We were definitely just trying to recover and still learning what it meant to be a diabetic family. And kind of we had just taken that first step of where you take all the really sugary foods out of the house. And we'd removed the Kool-Aid and the soda. And we'd gone through that process. And I remember right after my brother was diagnosed, it had been a few days, probably a week. and I was eating ice cream from an ice cream truck. And I was kind of making fun of him a little bit because I was a bratty 10-year-old little sister that he couldn't eat it yet. Like I said, our endocrinologist was an old school guy, very much into the no sugar of any kind once you're diabetic. And so I was making fun of the fact that he couldn't eat it. And a week later, I was diagnosed with diabetes. And then, you know, it was very much karmic about the fact that I was not an understanding little sister when he got diagnosed. and so a week later the universe was like well if you're not going to be understanding about your brother's diagnosis you're going to get to live it with him and so for the next 18 years we we've been doing this together you know whenever that I had a low blood sugar the next day I could talk to him about it so it was nice having kind of a friend in that sense where a lot of other people when they grow up feel a lot more alone I always had my brother there with me which was a very nice part of getting diagnosed so close to him is I always had someone to talk to. And I think it really emphasized how important peer support is for me is having that close

[00:05:49] Rob Howe: relationship with him. Well, and I think that's such an important part of a, of a diabetic's life, especially a type 1 that like sort of goes overlooked or maybe there isn't as much publicity about. Um, I know I had Derek Thieler on the podcast and he talked about, you know, His sister was diagnosed three years after him. So just having that person to rely on and just that even if they don't know it, just them going through a day to day can just provide so much positive reinforcement and motivation for somebody.

[00:06:19] Erin Akers: Especially seeing that someone else is living those small challenges, not even necessarily the big ones, but just the little things that we deal with, the sight changes, the irritation over having to get poked and like all of the little things that we don't necessarily talk about having living with someone who has diabetes you just see them also dealing with it and you know this is just part of the disease I am not abnormal this is just what living with diabetes is like and so for me having him there was very much part of normalizing a disease that made me feel

[00:06:52] Rob Howe: abnormal in the rest of the world well and and I want to focus on that too because that comes back to my second piece about the rhetoric that doctors and nurses use during diagnosis is, you know, you do feel alone depending on where you're diagnosed. Not everybody has a community of type ones around them where they are. So it does feel like you're sort of dealing with this all alone, especially when you're a younger kid and you don't really understand. It's hard for you to process why you have to do things and other people don't. And so I want to talk about that as well. Like when you guys were not only one of you, but both of you diagnosed the language that you talked about that was sort of very focused on the number and very relentless and very sort of harsh and sharp in terms of the language that was used with you during diagnosis. I want to talk a little bit about that. I want to focus on those feelings that sort of shaped

[00:07:49] Erin Akers: your relationship with food and type 1 early on. Yeah, I think there needs to be a lot more focus on language because when you're talking about for so many of us were diagnosed as children that's the peak diagnosis time is teenagers is um children and adolescents is the peak diagnosis for type 1 diabetic and so these are kids who are really listening to the language that their doctors are using and when they're using good and bad to describe things like food and when you're having a printout of numbers and a doctor walks in with a piece of paper and all there are are a hundred numbers on them. And they say, you're either good or bad based on these numbers. What you have come out of this are teenagers who are obsessed with food and obsessed with numbers. And we're not asked about our feelings all the time. And when I was, I mean, this was of course, 18 years ago, but 18 years ago, we weren't asked about our mental health and how we felt about our diabetes and about burnout. We were just asked about the numbers are what we were eating and and then sent on our way. And we were either good or bad based on that. And so I attached the labels of good and bad to food, which later led to restrictive behavior, really obsessive behavior, and a really unhealthy relationship with food. And in fact, the fact that diabetics are two and a half times more likely to end up with an eating disorder than their non-diabetic peers, shows you that we have a heightened risk because of things like the languaging that we're getting taught as children. We're getting these enhanced lessons around food, but they're not teaching us to be healthier or more in tuned with food, just to be more obsessive around food.

[00:09:32] Rob Howe: Right, because I think, like you said, using words like good and bad, good and bad blood sugar, good and bad diabetic, good and bad food, those are traps, right? Because there's no such thing, right? Everyone's different. Every meal's different, even if it's the same ingredients, same portions. I can eat the same thing three days in a row and have a different blood sugar every day based on my hormones, the weather, and what stress I'm under.

[00:09:58] Erin Akers: And yet, walking in as a 10-year-old do not understand that complexity. I was not taught that. I was just taught that if I eat the right foods and if I take the right insulin, then I should be a good diabetic. And no one taught me that that's not really the way diabetes works. And in fact, the fact that we're taught diabetes control and the word is control, well, you don't control diabetes any more than you control cancer. Diabetes is managed. And yet we're taught we should control a disease, but that's not the way it works. And so we're given this perfectionism that leads to things like eating disorders and anxiety and depression. And then doctors are surprised that diabetics have a 33% higher chance of having depression and anxiety and a two and a half times higher. eating disorders.

[00:10:51] Rob Howe: Okay. I want you, first of all, that you're, I love your passion. That's, it's incredible. I want, we had a little bit of a cutout. The last thing when you talked about, so I want you to say that one more time, like diabetics are 33% more likely to have mental illnesses like anxiety and depression and two and a half times.

[00:11:08] Erin Akers: Diabetics are 33%.

[00:11:11] Rob Howe: Yeah.

[00:11:12] Erin Akers: Diabetics are 30%, have a 30% higher increase of depression and anxiety and a two and a half times chance of ending up with an eating disorder. And that's because we are taught to be obsessive with our insulin and to be controlling every aspect of our life. And so when suddenly something is out of control, we are taught that that is literally coming after our very existence, our very life. And so we have these higher rates of anxiety and these higher rates of depression because of the

[00:11:41] Rob Howe: very way we are taught to live our lives by these doctors. Well, and let's be fair as well, because you talked about diabetes being managed. An endocrinologist is only a percentage of that. So for example, you talked about eating disorders, you talked about anxiety and depression, neither of which of those really fall into a endocrinologist's purview. So I really want to talk like as after you were diagnosed and obviously you're very young um as you're going into as you're going into the next few years and sort of figuring out those those toughest pieces not only the toughest parts of of your journey as a diabetic in the first few years but also as a teenager and going into those tough formative years with hormones and changes what what was that like

[00:12:32] Erin Akers: for you? What did that manifest itself as? So I was around 14 when the diabetes burnout and the frustrations around being just a teenage woman kind of all came to a head. And I started omitting my insulin and engaging in the practice that's known as diabulimia. I was tired of being diabetic. I was tired of being different than my friends. And I wanted a change. I wanted a freedom. I wanted to be free from the diabetes. And I just stopped giving it the care and the attention that I needed to. And I slowly just tried to pull back from my diabetes the way you would pull back from school or job. Kind of, I was done with it. I had felt like I had put so much pressure on myself for the first four years trying to be perfect. trying to be that perfect diabetic we're all shooting for, that, you know, perfect A1C, those perfect blood sugars. And that quest for perfection really led me down a dangerous path. It led me to burnout and it led me to diabulimia. And so when I was 14, I just decided I couldn't do it anymore. I couldn't deal with the unhealthy relationships with food, the unhealthy relationship with perfectionism and insulin. And I just quit. I stopped taking my insulin. I mean, obviously not altogether, but I greatly reduced my insulin intake. I started engaging in diabulimia and I did that for on and off for almost a decade. And I let my A1C go into, I mean, my highest was probably around 15. I ended up with all sorts of complications that I still deal with today from it. And I stopped handling, dealing with all of the emotions that come with diabetes. I just wanted to be numb and I wanted that high blood sugar numbness and I wanted to be able to eat whatever I wanted. And instead of doing it in moderation, I had been so restrictive about it. And so I just let myself eat whatever I wanted and I stopped taking my insulin and I fell down into a very dark path that because of the way that diabetes works led me down complications

[00:14:41] Rob Howe: that I'll have for the rest of my life. And I want to back up a little bit because I want, I want you to offer some context around, first of all, an awareness about diabulimia itself. But diabetes burnout is a very hot button popular topic, especially among diabetes teens, because of what you're talking about. So give us a little bit of background on, I think,

[00:15:07] Erin Akers: you know, most of our- Yeah, I think it's that quest for perfection.

[00:15:10] Rob Howe: No, and I totally agree because you're a child, right? Like you don't really have, you're not equipped to deal with that type of burden that you've placed on yourself. So, but, but I also want you to give us like a little bit of education on diablemia itself and how it manifests. I think, you know, most of our listeners can put the two together, but I want to hear from you and also you know, how many people are affected by this and you know, how many people are we talking about that are going through these types of things? And, you know, you talked about it for over a decade. And I also want to know like, what, what were your conversations like with your family, with your brother, with your doctor, and just sort of where you were at during those times?

[00:15:49] Erin Akers: Yeah, so it was a dark time. It happened for a lot of reasons. It started because of the diabetes burnout. And like we talked, it's so common for so many diabetics. I think, you know they just did a study out of I want to say Behavioral Diabetes Institute on diabetes burnout where they show that it's something that literally every diabetic is going to face it's not an 80th percentile and 90th percentile it's 100th percentile if you're diabetic at some point in your life you're going to face diabetes burnout because we're taught to be perfectionist in our blood sugar quest and there's nothing you can go at 100 of the time trying to be perfect and not eventually get burnt out there's just nothing you can quest for that hard and not eventually get tired of it. And so for me, and for so many teens, I hit that burnout really early because I, it's so hard to be a child and trying to learn who you are and what you want to do in the world while also being your own pancreas and also trying to be both regular kid and not die at the same time. And so that quest for me led me to diabulimia, which is the practice of omitting insulin in order to lose weight. And for me, it came because my doctor, I was an overweight child, I was medically overweight. And my doctor kept pushing weight loss, he kept telling me how important weight loss was going to be, and was not a great and again, this is the importance of numbers and how important is for a diabetic to be in those good numbers and it within a good weight range. And so he pushed me kind of towards the weight loss track and towards the weight loss track and how important it is for a diabetic to be fit. And I decided anything to lose weight was important. And I stopped, I really kind of pulled away from my brother and I stopped talking to kind of him. And I was feeling very isolated in my diabetes. And it led me to just kind of withdraw from insulin, which is not abnormal. 35 to 40% of type 1 diabetic women, and these studies have been out for about 20 years now, there are almost a dozen of them, have admitted to omitting insulin in order to lose weight, which is a practice known as diabulimia. And so it's a very common thing that diabetic women have been doing for over 20 years. My aunt on my dad's side is actually a type 1 diabetic, and I found out it's something she did as a teenager, which means 40 years ago they were doing this as well. It's a very common practice that diabetic women and men, we have the latest study just came out of Norway that also included diabetic men. So this is a practice that both diabetic men and women are engaging in, in order to lose weight as a coping mechanism for the stressors that we're putting on diabetics in a quest for perfection.

[00:18:39] Rob Howe: Wow, that's, it's so powerful, right? And I think it's easy for us to get caught up in like daily struggles as type ones, right? Whether that's high blood sugar, low blood sugar, whether that's insurance, whether that's doctors. And until you really hear that, A, all of us are going to go through diabetic burnout at some point. So let's accept that and help each other and build each other up. And B, that this has been going on for so long and that there's not a whole lot of awareness on it. It's just sort of coming to the forefront. Like how many people have been out there alone dealing with this? And I want to ask you, you know, as you were going through this very dark place, who did you turn to? How did you have those conversations? Were you able to? How alone did you feel during that time? And how did you sort of begin to climb out of it?

[00:19:36] Erin Akers: So I think the biggest problem that existed for me and still continues, pervades to exist, is that sense of isolation. I think it comes from two areas. One, I think as a diabetic community, the diabetes online community, which the doc is great and I'm a very active member of it, but there's a lot of shaming that still happens in the diabetes community. And we tell diabetics from diabetics to quest for that perfect A1C. And when we go online for support, we need to be offering that support and not telling diabetics, well, just take your insulin and shoot for that A1C of five. And instead be offering some more legitimate, real life help to other diabetics. Because I think diabetic shame from other diabetics is a real issue. And when I was going online for help, I encountered it. I encountered other diabetics just being like, well, just take your insulin. It's not that simple. It's a mental health disorder and a very real eating disorder. And it would be the equivalent of telling an anorexic just to eat. It's just not that simple. It's in the DSM-IV under purging disorders. It's a very real eating disorder. And when I tried to talk to my doctor about it when I was 14, he dropped me as a client. And it's actually what flared it from something I was doing occasionally into a full-blown disorder. is when my endocrinologist, the man that had diagnosed me at 10 years old, asked me why my A1C had gone from a steady, normal A1C into the 10s and 11s at that point and still climbing. I finally told him, well, I'm not taking my insulin to lose weight. And he dropped me as a client. He said, I can't do this anymore, or as a patient, and said, I can't do this anymore. You're risking your own health. You're a non-compliant diabetic, is what he called us. And we hate that term. I don't think there is such a thing as a noncompliant diabetic because there's not a diabetic out there that's thinking, well, I hope to go blind and die by the time I'm 40. There are diabetics in depression, there are diabetics in distress, and there are diabetics dealing with things. But there's not a diabetic out there that's hoping, well, I really want to get complications and die in 20 years. but doctors unwilling to look for the deeper issues are dropping diabetics as non-compliant and that's what happened to me and not just once but three times before I was able to find help and so eventually I stopped going to endocrinologists as a teenager started going to walk-in clinics to get the insulin that I needed and it was actually a period of five years where I didn't have a steady endocrinologist and would just go get insulin at walk-ins or hospitals or one-offs from like a PCP I would say my endocrinologist is just moved or it doesn't take my insurance anymore. Anything to not go back to see an endocrinologist because I felt shame from them to making the situation worse and lengthening the time I went untreated and not taking my insulin.

[00:22:32] Rob Howe: And, you know, I've had my fair share of scraps with endos over the years as well. um what you know to be dropped like that and i think again just like this path of negative rhetoric and negative response to be processing this as a young person what i i just um what what were your family's thoughts like you know you're at this point you know you're you're trying to be independent as a teenager um you know your brother is also a type 1 you've got other type ones in your family who were you able to rely on during this time?

[00:23:08] Erin Akers: I am immensely lucky. My mother is the mama bear from every story. She is my fiercest advocate. She wrote a complaint letter to every hospital and doctor that did not treat me the way a diabetic should be treated. And so throughout the 10 years, almost 10 years, that I was struggling, she was always by my side. Um, over the years, I've been hospitalized over 50 times, um, for a range of issues, um, from several dozen times, um, all the way up to staph infection in my spine because I had no immunity, immune system because I wasn't taking my insulin. And for every trip, she was sitting there holding my hand, making sure they were treating me right. No matter what, you know, because doctors don't like to take care of diabetics with high blood sugars. They're just not as understanding in the ER. And so my mom was with me every step of the way, making sure I was being treated well and always advocating for me and always trying to stand there with me. And she works with me now at Diabulimia Helpline. She's our friends and family liaison. She is amazing. She learned so much over the 10 years that we were kind of fighting together. And there were days when I didn't want to fight for myself anymore. Most days, actually, over those 10 years, I was not unwilling to fight for my own health. And she was always there fighting for my

[00:24:30] Rob Howe: health for me for the days that I wouldn't do it. So I was very lucky. Well, and I think that's so important, right? Like whether that's another type 1, or that's a mother or a friend or anyone who's just there for you, right? It just can support you and not look at that judgment of bad or good or, you know, say that you're non-compliant or whatever the case may be,

[00:24:52] Erin Akers: or whatever the rhetoric is. As an adult now with a partner, I have to say his support over the last three years, you know, when I have a low blood sugar in the middle of the night and he sits up with me and rubs my back while I'm drinking juice. And in the morning, if it's high, which it was this morning, I had a low last night, I overtreated and it was high this morning. And he just went, that's unfair. That's, you know, that's crap. And his understanding is, is just as important. Those type threes, I think, walk through the life and the good ones are the ones that get us their nights. They do. And I think that they go, you know, the effect of type 1, you know, like you said, on type threes, on significant others, on family members, often goes, you know, they're often goes unpraised or unheralded, but they, you know, really are sort of the masters behind the scenes, right? Just a pat on the back or a rub on the back or a, hey, you okay or that's unfair. Just someone there to say, hey, I understand that you're going through this and I'm here for you. Not trying to fix the problem, just being there as support. Absolutely. And I think that's so important and not talked about is that not trying to fix it because there is no fixing it. Sometimes I can't even fix the diabetes. I don't understand what it's doing. And so just that understanding of sometimes the disease does what it does has proven to be way, way more important in my recovery is that understanding than a diabetes police ever could have been, you know. And there were times when my parents tried to be the diabetes police and they thought that that was what their job was, was to police what my food intake was and to try to police my insulin. But it never worked. And the understanding route has always proven more effective and more beneficial for both me and my brother. Because diabetics, we know what we need to do. And I think having that supportive loved one that understands, she knows what she's doing, she's going to get there. She understands food is so important. And we try to really counsel against that diabetes police over helicoptering because it can really be an intrusion to, like you said, a teenager trying to grab their independence. You know, it can really interfere with that integral part.

[00:27:18] Rob Howe: So I definitely want to focus a little bit on, you know, as you're coming out after that almost 10-year battle with diabulimia, where do you go from there? And then how do you decide to take matters in your own hands and start the Diabulimia hotline and running your own nonprofit and helping other people who are going through these types of things?

[00:27:40] Erin Akers: Yeah, it all started from a very selfish place. I came out of an eating disorder treatment center, and I was very much alone. When I went in to eating disorder treatment centers, there were none specifically for Diabulimia. There are four now that we have helped cultivate, but when I went in, there were none. And so I went into a program in Florida that was kind of flying by the seat of their pants. We were both kind of trying to wing it as we went. And when I came out, I felt very much alone still because although the girls in the center were great and amazing and still friends to this day, they didn't understand the diabetes part of the eating disorder. And how frustrating it is to be working so hard on regaining a healthy relationship with food. And then at 3 in the morning, you have a blood sugar of 33. And you walk into the kitchen and you eat an entire jar of jelly because you're scared you're going to die. And you have a binge episode. And that's diabetes very specific. And no one else in the house understood those issues. And so I came out and I wanted to talk. At this point, I didn't know that my aunt had suffered yet, and I just wanted to talk to someone. And so I reached out to the National Eating Disorders Association and they said, well, this sounds like a problem we can't really help. So I reached out to the American Diabetes Association and they said, well, this is an eating disorder problem. We can't help. And I said, well, someone needs to help. And so I started a Facebook support group. And that's how it kind of all started was I just wanted to find other people because I had done the research and I knew that scientifically speaking, there were 35 percent of diabetic women doing this. So they were out there. I just needed to find them. And I opened a Facebook support group. And within six months, we had over a thousand members from five different continents. And so I knew this was a very real issue that needed some very real help. and within a year girls were asking for more than just peer support they needed resource they needed trainings their doctors had no idea about this disease and it turns out my endocrinologist was not the only one that was treating patients badly this was a very you know large phenomenon and girls were getting dropped and resources were going untapped and we know and I knew and my mom who is my right-hand man, kind of knew that there needed to be something done. And so in 2009, we incorporated as Diabulimia Helpline as a nonprofit to help because there was no one doing anything. And with such a large population falling between the cracks of eating disorder and diabetes, there needed to be an organization out there specifically for those who encounter both, because it is such a large population and such a unique problem. And so we became a nonprofit and started with client care and opened a 24-hour hotline. It was our first kind of big outing or big ordeal, I guess, is we decided to open just a hotline. So girls had a place to call when they were having a crisis because the internet can be a great tool, But if you're in the middle of a crisis, it's not always the most helpful. You want someone to talk to. You need someone in that moment. And so we opened up the 24-hour hotline, which is staffed completely by volunteers who are in recovery from diabulimia and or family. So sometimes we have people who work the phones who are family members. Like my mom works the phone sometimes. Because so many people who call are like mothers or fathers or sisters or loved ones. And so whoever you talk to on the phone has been there, has been where you've been, has been in a crisis, has dealt with the diabetes and eating disorders firsthand. And from there, it grew into a doctor education program. And we started training centers. And now there are four eating disorder centers that specifically have tracks for diabulimia. So there's a place to go now where you can get help specifically for diabetes and eating disorders. and in 2018 we're going to host the first eating disorder and diabetes conference which is our next kind of really large undertaking that we're excited about and we're just going to keep growing the awareness and the advocacy so that no one else falls in between the cracks because no one else should be suffering for a decade without any sort in the dark without any sort of resources is because there are now so many places you can turn to help for help.

[00:32:22] Rob Howe: And for you, you know, as you get that off the ground, which is, you know, a huge effort personally to do any sort of, you know, project that you're that close to and that you're that passionate about, you know, what were some of your, you know, as you think of successes or moments where you were like key moments for you in that process where you're like, wow, we really are helping people, you know, how, I guess not how quickly did that happen? Or, you know, what are those moments that stick out to you, you know, since 2009?

[00:32:51] Erin Akers: Yeah, there have been some really amazing. There are the ones that mean the most are the emails that we get from girls that were suffering and have been in recovery. And the one-off emails that's like where they were. I was dying. I was in a hospital. DKA every other week. And, and now, now I can reembrace my life. And the two that really stick out to me on a hard day, because with something like diabetes and eating disorders where it's lifelong and it's chronic, and it's something where you deal with so much of what we do is insurance helping that we have an insurance specialist on staff, and that can be very hard to deal with. And the two that I think that really stick out to me is we had a girl that joined the support group when we first opened up and she was in the UK and she was at the point where she would stop on her drive home from work to throw up, not severe DKA. And she would carry around water jugs with her, like milk, milk, water, because she was so dehydrated from work without throwing up. She was very, very sick and not sure about where she was going to do with her life and not sure about where she was going to go and really not wanting to die, but not wanting to live anymore. And she found recovery with the help of the support group and kind of what we were doing. And in 2011, opened up Diabetics with Eating Disorders in the UK, which is our sister organization over there and is doing what we do over there. And now she's in the process of getting her PhD in psychology and specializing in studying diabetics, disorders and diabetics. And she has published several papers now on eating and seeing where she was and kind of where the good she is going to do in the world because she has taken what I wanted to do and magnified it. They have passed guidelines in the NICE, which is the health organization over in the UK, on specifically diabetes and eating disorders and how you treat them. And it's a lot easier to get legislation passed in the UK because it's a lot smaller. But they've been able to make huge leaps and bounds in getting treatment passed, treatment protocols pass over in the UK and seeing all of the good that warms my heart on a hard day. And a client that we had hotline when we first turned it, when we first opened it, is now, who was very, very sick, was, ended up in the hospital with DKA several times a week, was contemplating suicide. Now has a bouncing baby girl, a two-year-old baby girl, moved up to Seattle to actually work with us and is now our client care coordinator. Has been in recovery for three, four years now, four years now, happily married with a very healthy, very healthy pregnancy, has an A1C in the sixes now, a very healthy, happy, um, left Indiana and a very unhealthy circumstance to really restart her life and, um, is my best friend now. Um, and whenever things get really hard, I just go over there and I play with her daughter. And I remember that all of this is possible because of the work that we do and that, um, there are girls all over the country and the world now living full and happy lives because of the work and the Facebook and the peer support. And most of that's not me. Most of that is other girls reaching out to girls that have struggled and finding friendships and support and strength in other people. We have friendships that have crossed oceans. We have a girl in Canada who just went over to Scotland to see one of her best friends that they met online. and they have a beautiful friendship and they go and see each other every couple of years and they're really strong in support in their recovery and we've had probably 3 000 girls pass through

[00:37:25] Rob Howe: the group now um to have found recovery and regained a real hold on their life that's incredible so i don't even know like you know the the amount of difference that you know that you guys are making that is so, so powerful. And just the story of, you know, somebody going from being extremely unhealthy and contemplating suicide to now being, you know, directly involved with you guys, client care coordinator and having a brand new baby girl to look at and say, hey, this is the, these are the results. These are the tangible results of the work that we do. That's super

[00:38:00] Erin Akers: powerful. Her daughter is very cute. It makes it a, it makes it a great, it's a great tangible result and she calls me aunt erin so um yeah she's two now and uh it's it's there's nothing like a little girl's face to really put bring home kind of the good work that we were doing because an unhealthy diabetic is never going to be able to to have that that full happy mother life you know pregnancy is is completely out of the question for most of these girls when they first come to You know, their body is so unhealthy that they've been told patients, our client care coordinator was told she would never be able to have a child again. And so she thought she was never going to be able to be pregnant. And so when she entered recovery and became pregnant, it was a real life changer for her because so many of our clients are told that's not going to happen for you now. And all they really need to do is regain control of their diabetes and they can regain control of their body and their lives. So it is a beautiful thing to see. So many of our girls have gone on to become mothers and find that pregnancy that they thought was impossible. And I think that really is one of the most beautiful things is when we have a girl post, I'm pregnant, I'm pregnant, I never thought it was possible. And we've had probably a dozen or so girls really kind of share their motherhood journeys in the group. Because so many of the girls worry that they won't be able to have kids now. and they want to prove one of our board members, Allison, who is a former client, just had a boy, a beautiful baby boy named Archer, who was just born six months ago. And they told her she wouldn't be able to have another child. And she proved them wrong. She was like, absolutely not. I can do this. And she did. And I think seeing that strength and that resilience in our clients keeps me going on a hard day as well.

[00:39:50] Rob Howe: Without a doubt. That's so strong. So, Aaron, I want to ask you this because, like, you know, I ask everyone this question on my podcast. And I think for you, it'll really resonate. And I'm really just curious to see what your response will be. But let's just paint the context for a second. So say you're running through an airport and you've got a flight to catch. And in 30 seconds, they're going to shut the gate, door to the gate, and you can't miss the flight. but you run into someone who has either been recently diagnosed with type 1 or is struggling with their type 1, maybe not necessarily with diabulimia, but just in the day-to-day, what's the one thing that you tell them in that 30 seconds before you have to jump on that plane?

[00:40:41] Erin Akers: Don't shoot for perfection. If I could boil down diabetes to one sentence, one tweet, if you will, uh, it would be, it would be don't shoot for perfection. That's, that's what gets you at the end. And that's what I think gets so many of us, you know, whether you end up with an eating disorder or not, I think diabetes distress and diabetes burnout, it all comes from that, that quest for perfection and nothing in life is ever going to be perfect. And so why, why would we expect our diabetes to be? It's just like everything else in life.

[00:41:19] Rob Howe: that's so true and i think like the everything else in life you know we always you know strive for perfection but maybe can fall off and it's just like the it's easier to say oh well i'm gonna have a cheat day on uh my diet or my exercise plan or something versus a cheat day with your diabetes like it's so right it's so different but we're never allowed to give ourselves that break with diabetes but if you don't it just it haunts you and haunts you until

[00:41:47] Erin Akers: there's nothing else you can think about is that quest for perfection. And although I will always be a person with diabetes, it's never going to be the first, like, it's never again going to be the thing I think about every second of every day, because that just, it led to such an unhealthy

[00:42:03] Rob Howe: place for me. And, you know, for somebody who might be thinking that way now, and sort of on that unhealthy track, what they're thinking, where do they reach out to find you guys? What's the best way for them to get in touch? How do they find help? Or if someone who is a friend,

[00:42:23] Erin Akers: how do they refer them there? What's that process? Yeah. So we have lots of ways to get in touch. Our website is diabulimiahelpline.org. Pretty simple. If you want to join the Facebook group, just search for Diabulimia Awareness on Facebook. We're the only Diabulimia Awareness group. or you can also call our helpline. The number is 425-985-3635. And like I said, that's 24 hours and 365 days a year. If you want to call on Christmas Eve, we have someone working on Christmas Eve. You want to call at three in the morning, that hotline is open at three in the morning. So there is never a time you can't call where someone is going to answer that phone. So you can always call that number and the website, of course, is always there. And the support group is great because it's not just talking to one person but there's going to be 12 people up no matter when you post um especially because it's um it's worldwide we have people from you know new zealand getting up right as we're going to bed so it's almost always active and it's a great place it's very it's very um co-ed we have men and women both people of all ages our oldest number is in her 70s. She's very active in posting. And our youngest member is the age of 18. So it really doesn't matter where you fall on that spectrum. We have people of all ages and both genders posting. So come join the group. And even if you don't want to post, read what other people are saying, you know, kind of learn about where everyone else is. And people post on all points of their recovery process. So if you are just learning about diabulimia, you can come. Or if you're You're unsure your recovery is starting to feel shaky again. Come post or read about someone else whose recovery is starting to feel shaky again. There's no rules about where you have to be or who you have to be. It's just a group to come and feel included and know that you're not alone.

[00:44:22] Rob Howe: Well, we will definitely include links to all the different touch points in the show notes. And Aaron, go ahead.

[00:44:30] Erin Akers: If anyone wants to get a hold of me, I'm on Facebook, Erin Akers, and I'm on Instagram, and I'm on Twitter, and I love to talk, obviously. And I'm always there to reach out and to...

[00:44:51] Rob Howe: I think we lost you there for a second. Nope. Are you there? try one more time to say hey just tell your personal where they can find you

[00:45:00] Erin Akers: personally so I'm also on Facebook Erin M. Akers and I'm on Instagram the Diabetic Dragon and I'm on Twitter and you can always come and find me I will always respond to an email a tweet any kind of you know shout out requests and I'm always here to talk so if you want to just talk to me personally about your story going on you can also reach out to me personally

[00:45:25] Rob Howe: boom well Erin thank you so much for your time thank you so much for the great work you're doing

[00:45:31] Erin Akers: yeah thank you so much for having me Rob and you know I'm happy to have you on the show if there's

[00:45:35] Rob Howe: anything we can do here to help please don't hesitate to reach out we're always you know trying you know doing our best to support all of these amazing causes and missions and really just doing our best to help people so anything we can do to help you and the Diabulimia hotline please, Helpline, please let me know.

[00:45:54] Erin Akers: Thank you so much. And thank you so much for your podcast. You know I love it so much.

[00:45:59] Rob Howe: Oh, well, thank you so much for saying that. That means so much to me. It's obviously, it's what makes me happy. It fills my cup. So thank you so much for saying that. Diabetic advocates reaching out for other diabetics. It's really, I think, what keeps us strong. It's the diabetic community really relies on people like you kind of spreading the good work that diabetic advocates are doing.

[00:46:22] Erin Akers: I couldn't agree more. You know, we're all of our individual missions are, you know, stronger together. I mean, that sort of just goes without saying. But, you know, the more we can do to sort of raise awareness and help each other, that's how we got connected.

[00:46:36] Rob Howe: So, you know, I'm happy to continue to make introductions and make connections. And I'm so happy that we have such a great community.

[00:46:45] Erin Akers: Thank you so much for having me, Rob.

[00:46:48] Rob Howe: Thanks for listening to Diabetics Doing Things. Subscribe to our newsletter for weekly emails and behind-the-scenes content. And if you or someone you know has an amazing story to share, send an email to rob at diabeticsdoingthings.com.