Life With Diabulimia
Video Transcript
Erin's Mom: You're asking me
to talk about when she died?
Oh god.
I'll need a moment.
Erin Akers: I remember being bent over the toilet vomiting and my mom would be so worried. She was like, this is the worst flu I've ever seen. And I kept reassuring her, you don't need to worry because I knew that the only thing that needed to be done was I needed to take my insulin, but I couldn't let her know that. And so I just said, well, you know, mom, diabetics, they don't have the greatest immune system.
The mind is like water. When it's turbulent, it's difficult to see. When it's calm, everything becomes clear.
Swimming was always something that I loved as a kid. Even though I hated being in a swimsuit, I loved being in the water. I could just dive into the water and it was quiet. I was 9 years old when I got diagnosed with Type 1 diabetes. Type 1 diabetes is an autoimmune disorder in which your body's pancreas stops being able to produce a hormone called insulin.
Erin's Mom: The first few years it was heart wrenching. Try to imagine being a 9-year-old and being told, you have a chronic illness that you will have for the rest of your life. There is no cure. You can manage it, but the management of it is a 24/7 job. With Type 1 diabetes, every single thing you do is a calculation.
What you eat for breakfast. If you have PE, are you having PE before lunch or after lunch? And how does that affect what insulin you have to give yourself at lunch?
Erin Akers: Type 1 diabetes really stole my childhood from me, in a way that it was no longer about chasing through sprinklers or running after the ice cream man. It was about calculating the grams of carbohydrates in those ice cream sandwiches. Or how much exercise that running through the sprinklers was going to detract from my insulin ratios in a day.
Erin's Mom: With Erin, because she was overweight when she was diagnosed, in addition to blood sugar numbers and total counts of carbohydrates and dosages of insulin, she also had this other number of weight. And her doctor hounded her and hounded her and hounded her about that number on the scale.
Erin Akers: It became harder and harder and harder to keep my head above water.
Erin's Mom: There's a thing called diabetes burnout where you just get tired of being diabetic. And you're bound to experience burnout and have periods where you just don't take as good care of your diabetes.
Erin Akers: August 16. I feel that familiar nausea rising in my stomach, swirling like a snake slithering inside. I know what it means. My sugar is well over 700 now. My body, alarmed by the amount of sugar coursing through my veins, is trying to warn me. With every passing second, my blood slowly fills with sugar and without insulin to combat it, it starts to pull my body down.
My kidneys start to struggle to function at 100%. The nerves of my feet die a little more. And like a drag of a cigarette, my life expectancy slowly starts to slip out of my hand.
The truth is, I don't want to die. But there is always one thing I want more than that, more than anything else. And that is to be thin.
I was done being diabetic. I was done being somebody's number. I was just done with it all. I was going to take a break and so, I stopped taking my insulin. I decided it was more important for me to lose weight than anything else. And I ended up losing everything in pursuit of it.
So at the age of 14, I developed an eating disorder known as diabulimia. So often at times, it feels like diabulimia is like trying to keep your head above water when you're learning how to swim. They keep throwing more and more things at you. Mental math. Do your arms. Now carbohydrate counting. Don't forget a kick. Oh yeah and exercise. Breathe, breathe, breathe. But at the end of the day, I was sinking to the bottom.
Erin's Mom: When I first started to notice signs that maybe something was wrong with Erin, it started with the number of days she was missing school. Both she and her doctor were able to convince me that because of her immune system and the diabetes that that's what was making her very vulnerable to everything that was in the germ factory of the school.
Erin Akers: And at the beginning, it was bouts of nausea that would last for weeks on end. And then there would be little infections. And it seemed like my body just couldn't get healthy.
Erin's Mom: And then there were -- I guess -- more diabetes-specific signs. How often we were needing to reorder insulin for her. She eventually got wise and just started having me order it, even though she wasn't using it.
Erin Akers: To trick her into thinking that I would have better blood sugar readings, I would test my blood sugar and wait till it had a quote/unquote perfect blood sugar. And then, I would put it in the top of a lid. And whenever I needed to use that blood again, I would rehydrate it and retest that blood knowing it was already a perfect blood sugar. And then, retest it. And it would always come up between 80 and 120 every time.
Erin's Mom: Some things were starting to not make sense.
Erin Akers: And I would do 30 tests all at once and then bring her out the meter and it would just all be from the last 10 minutes.
Erin's Mom: She was also starting to have frequent DKA, which is diabetic ketoacidosis episodes. And those are episodes where you have to go to the hospital, be put on IVs. Sometimes, you end up in ICU. And that happens to an average diabetic a few times in their lifetime. And for Erin, it was starting to happen every few months.
Erin Akers: It was a dramatic amount of weight that I lost and the problem with diabulibia is that you can see some really dramatic weight loss because you're losing things like water weight and muscle tissue and things that really matter to your body's health. But you can't tell that when you step on a scale. All you know is that you're 5 pounds down than you were the week before.
You're more likely to develop staph infection, muscle atrophy, kidney infections, urinary tract infections, liver disease, coma, death. One of the hardest complications for me to deal with was the chance that I could no longer have children. And for many other women like me, this is a very real and very alarming complication that's on the rise.
Nov. 9, 2001. Every day, I get sicker and sicker and my body becomes more frail. Isn't this what I wanted, though? My pants fall down as I walk, and secretly, I'd leap for a joy. If I could leap at all. Regardless of what it had done to my body physically -- and it had wracked a serious toll -- when I got back to school that fall, all my friends were so complimentary. And I took it. I took it and I ran with it.
Erin's Mom: Initially, I thought it was an eating disorder. We took her to the psychologist.
Erin Akers: And I told him absolutely everything I was doing. I was completely honest. And he looked at me and he said, are you starving yourself? And I said, no. And he said, are you forcing yourself to throw up? And I said, no. And he sat me down with my parents and he said --
Erin's Mom: She did not have an eating disorder, she was just a rebellious teenager.
Erin Akers: I spent the next several years taking my body to its limits.
Erin's Mom: And so we spent the next 2 years trying every parenting technique in the book. We went to workshops. We read. We went online. None of it worked, because, of course, we weren't actually addressing the problem.
Erin Akers: March 20. The feeling of disgust is drowning me whole. I'm swept away by this tidal wave of self-hatred and anger.
Erin's Mom: They do teach you, as a parent, to try to teach your child as a whole person and not just as a diabetic. If they're grouchy, if they're in a bad mood, don't immediately ask, what's your blood sugar? Implying all of their moods are controlled by their blood sugar. Because they aren't. They're whole people. And they're allowed to be depressed, and happy, and angry, and everything else just like the rest of us.
Erin Akers: So after I graduated from high school, I said I was going to stop my eating disorder. I had, at that point, missed my prom because I was in the hospital. And it was then that I realized, I don't have the control over this that I thought I had.
Erin's Mom: When she went away to college, we thought, fresh start. This will be great. Everything will be fine.
Erin Akers: But it followed me to college. And it followed me to the dorm rooms. And it followed me to the late nights and I ended up relapsing.
Erin's Mom: Erin broke her leg -- shattered it, actually.
Erin Akers: I fell, just walking to my bathroom.
Erin's Mom: Got her to the hospital. They did surgery. Fourteen screws, two plates.
Erin Akers: The doctor told my mom everything had gone OK, but I knew something was wrong immediately. I could feel my leg, which they told me I wasn't supposed to be able to do. In the preceding hour, they would give me the necessary dosage of morphine for someone my height and weight.
Erin's Mom: What would have been a perfectly fine dose of morphine for anyone else sent Erin into respiratory failure.
Erin Akers: I flat-lined.
Erin's Mom: And she turned blue and stopped breathing. It was, probably, the scariest moment of my life.
Erin Akers: They called out a code blue. Erin's Mom: All the nurses come rushing in and one crawls up on top of her and they're getting the paddles ready. And it's one of those times where, it was less than a minute and it felt like 10 hours.
Erin, Erin, Erin --
I knew because of the diabulimia that Erin might not respond to resuscitation, so I didn't know if she was coming back or not. It was the scariest minute of my entire life.
Erin Akers: Just under a minute later, I would come back. I would remember a man sitting on my chest giving me CPR, trying to apply the paddles. And right before he could, I would take my breath of life so that they wouldn't have to.
When I came back and I realized what had happened, the very first thing I thought was, they're going to make me start taking insulin again. It wasn't until I saw my mom's face that I was able to say, something has to change, and something has to change now. People often say that recovery doesn't come in a straight line.
Erin's Mom: Recovery does not look like this.
Erin Akers: My recovery relapse dance has gone up and down and all over the place.
Erin's Mom: You get a lot better and then you fall. And then you get back up and you swirl around for a little bit. And then you get a little better and then you fall. And that's what's hard.
Erin Akers: My mom and I found an eating disorder recovery center and I was there for 3 months, where I did a lot of work with a really amazing therapist. And so when I came out, I knew I needed to find more people like me. And that's kind of how my plight into advocacy work and with Diabulimia Helpline really all got started.
Erin's Mom: She woke up one morning and needed help and went out and looked for it. After she found 200 people who were all saying the same story and had the same struggles, she just stood up and said, well nobody else is doing this so I guess I will.
Erin Akers: Diabulimia Helpline was first, it was just a tool to help me recover myself. I was alone. I started an online Facebook support group and then from the Facebook group, we started the website. From there, we went on to do a 24-hour hotline that can be reached 365 days a year.
Erin's Mom: I'm amazingly proud that it has been her just consistently and constantly putting her heart out there. The way she's gone about it, I am so proud. So immensely proud.
Erin Akers: And the thing that keeps coming back time and time again, is the people. The connections I have made. The lives that we've saved. The kids that have been born because Diabulimia Helpline exists now. These are all of the amazing things that I know wouldn't exist if I had just given up when my eating disorder told me to.
One of my favorite quotes is, "She leaves a little sparkle everywhere she goes." And I realized, I wasn't leaving anything. I wasn't leaving joy, or light, or life, or love anywhere I went.
And now I get to fully embrace my life and there is nothing more important to me than being healthy and loving the skin that I'm in, there's nothing better than being me, and that's good enough.
Erin Akers: I remember being bent over the toilet vomiting and my mom would be so worried. She was like, this is the worst flu I've ever seen. And I kept reassuring her, you don't need to worry because I knew that the only thing that needed to be done was I needed to take my insulin, but I couldn't let her know that. And so I just said, well, you know, mom, diabetics, they don't have the greatest immune system.
The mind is like water. When it's turbulent, it's difficult to see. When it's calm, everything becomes clear.
Swimming was always something that I loved as a kid. Even though I hated being in a swimsuit, I loved being in the water. I could just dive into the water and it was quiet. I was 9 years old when I got diagnosed with Type 1 diabetes. Type 1 diabetes is an autoimmune disorder in which your body's pancreas stops being able to produce a hormone called insulin.
Erin's Mom: The first few years it was heart wrenching. Try to imagine being a 9-year-old and being told, you have a chronic illness that you will have for the rest of your life. There is no cure. You can manage it, but the management of it is a 24/7 job. With Type 1 diabetes, every single thing you do is a calculation.
What you eat for breakfast. If you have PE, are you having PE before lunch or after lunch? And how does that affect what insulin you have to give yourself at lunch?
Erin Akers: Type 1 diabetes really stole my childhood from me, in a way that it was no longer about chasing through sprinklers or running after the ice cream man. It was about calculating the grams of carbohydrates in those ice cream sandwiches. Or how much exercise that running through the sprinklers was going to detract from my insulin ratios in a day.
Erin's Mom: With Erin, because she was overweight when she was diagnosed, in addition to blood sugar numbers and total counts of carbohydrates and dosages of insulin, she also had this other number of weight. And her doctor hounded her and hounded her and hounded her about that number on the scale.
Erin Akers: It became harder and harder and harder to keep my head above water.
Erin's Mom: There's a thing called diabetes burnout where you just get tired of being diabetic. And you're bound to experience burnout and have periods where you just don't take as good care of your diabetes.
Erin Akers: August 16. I feel that familiar nausea rising in my stomach, swirling like a snake slithering inside. I know what it means. My sugar is well over 700 now. My body, alarmed by the amount of sugar coursing through my veins, is trying to warn me. With every passing second, my blood slowly fills with sugar and without insulin to combat it, it starts to pull my body down.
My kidneys start to struggle to function at 100%. The nerves of my feet die a little more. And like a drag of a cigarette, my life expectancy slowly starts to slip out of my hand.
The truth is, I don't want to die. But there is always one thing I want more than that, more than anything else. And that is to be thin.
I was done being diabetic. I was done being somebody's number. I was just done with it all. I was going to take a break and so, I stopped taking my insulin. I decided it was more important for me to lose weight than anything else. And I ended up losing everything in pursuit of it.
So at the age of 14, I developed an eating disorder known as diabulimia. So often at times, it feels like diabulimia is like trying to keep your head above water when you're learning how to swim. They keep throwing more and more things at you. Mental math. Do your arms. Now carbohydrate counting. Don't forget a kick. Oh yeah and exercise. Breathe, breathe, breathe. But at the end of the day, I was sinking to the bottom.
Erin's Mom: When I first started to notice signs that maybe something was wrong with Erin, it started with the number of days she was missing school. Both she and her doctor were able to convince me that because of her immune system and the diabetes that that's what was making her very vulnerable to everything that was in the germ factory of the school.
Erin Akers: And at the beginning, it was bouts of nausea that would last for weeks on end. And then there would be little infections. And it seemed like my body just couldn't get healthy.
Erin's Mom: And then there were -- I guess -- more diabetes-specific signs. How often we were needing to reorder insulin for her. She eventually got wise and just started having me order it, even though she wasn't using it.
Erin Akers: To trick her into thinking that I would have better blood sugar readings, I would test my blood sugar and wait till it had a quote/unquote perfect blood sugar. And then, I would put it in the top of a lid. And whenever I needed to use that blood again, I would rehydrate it and retest that blood knowing it was already a perfect blood sugar. And then, retest it. And it would always come up between 80 and 120 every time.
Erin's Mom: Some things were starting to not make sense.
Erin Akers: And I would do 30 tests all at once and then bring her out the meter and it would just all be from the last 10 minutes.
Erin's Mom: She was also starting to have frequent DKA, which is diabetic ketoacidosis episodes. And those are episodes where you have to go to the hospital, be put on IVs. Sometimes, you end up in ICU. And that happens to an average diabetic a few times in their lifetime. And for Erin, it was starting to happen every few months.
Erin Akers: It was a dramatic amount of weight that I lost and the problem with diabulibia is that you can see some really dramatic weight loss because you're losing things like water weight and muscle tissue and things that really matter to your body's health. But you can't tell that when you step on a scale. All you know is that you're 5 pounds down than you were the week before.
You're more likely to develop staph infection, muscle atrophy, kidney infections, urinary tract infections, liver disease, coma, death. One of the hardest complications for me to deal with was the chance that I could no longer have children. And for many other women like me, this is a very real and very alarming complication that's on the rise.
Nov. 9, 2001. Every day, I get sicker and sicker and my body becomes more frail. Isn't this what I wanted, though? My pants fall down as I walk, and secretly, I'd leap for a joy. If I could leap at all. Regardless of what it had done to my body physically -- and it had wracked a serious toll -- when I got back to school that fall, all my friends were so complimentary. And I took it. I took it and I ran with it.
Erin's Mom: Initially, I thought it was an eating disorder. We took her to the psychologist.
Erin Akers: And I told him absolutely everything I was doing. I was completely honest. And he looked at me and he said, are you starving yourself? And I said, no. And he said, are you forcing yourself to throw up? And I said, no. And he sat me down with my parents and he said --
Erin's Mom: She did not have an eating disorder, she was just a rebellious teenager.
Erin Akers: I spent the next several years taking my body to its limits.
Erin's Mom: And so we spent the next 2 years trying every parenting technique in the book. We went to workshops. We read. We went online. None of it worked, because, of course, we weren't actually addressing the problem.
Erin Akers: March 20. The feeling of disgust is drowning me whole. I'm swept away by this tidal wave of self-hatred and anger.
Erin's Mom: They do teach you, as a parent, to try to teach your child as a whole person and not just as a diabetic. If they're grouchy, if they're in a bad mood, don't immediately ask, what's your blood sugar? Implying all of their moods are controlled by their blood sugar. Because they aren't. They're whole people. And they're allowed to be depressed, and happy, and angry, and everything else just like the rest of us.
Erin Akers: So after I graduated from high school, I said I was going to stop my eating disorder. I had, at that point, missed my prom because I was in the hospital. And it was then that I realized, I don't have the control over this that I thought I had.
Erin's Mom: When she went away to college, we thought, fresh start. This will be great. Everything will be fine.
Erin Akers: But it followed me to college. And it followed me to the dorm rooms. And it followed me to the late nights and I ended up relapsing.
Erin's Mom: Erin broke her leg -- shattered it, actually.
Erin Akers: I fell, just walking to my bathroom.
Erin's Mom: Got her to the hospital. They did surgery. Fourteen screws, two plates.
Erin Akers: The doctor told my mom everything had gone OK, but I knew something was wrong immediately. I could feel my leg, which they told me I wasn't supposed to be able to do. In the preceding hour, they would give me the necessary dosage of morphine for someone my height and weight.
Erin's Mom: What would have been a perfectly fine dose of morphine for anyone else sent Erin into respiratory failure.
Erin Akers: I flat-lined.
Erin's Mom: And she turned blue and stopped breathing. It was, probably, the scariest moment of my life.
Erin Akers: They called out a code blue. Erin's Mom: All the nurses come rushing in and one crawls up on top of her and they're getting the paddles ready. And it's one of those times where, it was less than a minute and it felt like 10 hours.
Erin, Erin, Erin --
I knew because of the diabulimia that Erin might not respond to resuscitation, so I didn't know if she was coming back or not. It was the scariest minute of my entire life.
Erin Akers: Just under a minute later, I would come back. I would remember a man sitting on my chest giving me CPR, trying to apply the paddles. And right before he could, I would take my breath of life so that they wouldn't have to.
When I came back and I realized what had happened, the very first thing I thought was, they're going to make me start taking insulin again. It wasn't until I saw my mom's face that I was able to say, something has to change, and something has to change now. People often say that recovery doesn't come in a straight line.
Erin's Mom: Recovery does not look like this.
Erin Akers: My recovery relapse dance has gone up and down and all over the place.
Erin's Mom: You get a lot better and then you fall. And then you get back up and you swirl around for a little bit. And then you get a little better and then you fall. And that's what's hard.
Erin Akers: My mom and I found an eating disorder recovery center and I was there for 3 months, where I did a lot of work with a really amazing therapist. And so when I came out, I knew I needed to find more people like me. And that's kind of how my plight into advocacy work and with Diabulimia Helpline really all got started.
Erin's Mom: She woke up one morning and needed help and went out and looked for it. After she found 200 people who were all saying the same story and had the same struggles, she just stood up and said, well nobody else is doing this so I guess I will.
Erin Akers: Diabulimia Helpline was first, it was just a tool to help me recover myself. I was alone. I started an online Facebook support group and then from the Facebook group, we started the website. From there, we went on to do a 24-hour hotline that can be reached 365 days a year.
Erin's Mom: I'm amazingly proud that it has been her just consistently and constantly putting her heart out there. The way she's gone about it, I am so proud. So immensely proud.
Erin Akers: And the thing that keeps coming back time and time again, is the people. The connections I have made. The lives that we've saved. The kids that have been born because Diabulimia Helpline exists now. These are all of the amazing things that I know wouldn't exist if I had just given up when my eating disorder told me to.
One of my favorite quotes is, "She leaves a little sparkle everywhere she goes." And I realized, I wasn't leaving anything. I wasn't leaving joy, or light, or life, or love anywhere I went.
And now I get to fully embrace my life and there is nothing more important to me than being healthy and loving the skin that I'm in, there's nothing better than being me, and that's good enough.