According to the National Eating Disorders Association, Diabulimia is "an eating disorder in a person with diabetes, typically Type I diabetes, wherein the person purposefully restricts insulin in order to lose weight." I suffered from this without even knowing there was a word for it. Please read and help me educate others about this eating disorder that is, unfortunately, more common than we think.
Sometime ago, I posted a photo on my Instagram stories where I'm standing in Central Park in the Spring, smiling and looking happy as can be, even though I was anything but that. Not only was I going through a strange, tumultuous point in my life where I was traveling to NYC for the sake of a pointless relationship, but I was really very sick.
My entire life, I've been on the heavier side. I was bullied. A lot. I can remember incidents starting in pre-school and ending the last week of my senior year of high school. (This is another post for another time). Anyway, when I moved to San Francisco at 19, I started losing weight. I blamed it on the fact that I was constantly walking up and down steep city streets, that I was a starving college student living off of coffee and Cup of Noodles. But the first sign that told me these weren't the reasons was that I was always extremely thirsty and peeing every 30 minutes. The urgency with which I had to go to the bathroom was so intense, sometimes I couldn't go back to sleep because I didn't want to have an accident.
One weekend, I took the Caltrain home to visit my parents. I was so thirsty, I probably drank the entire gallon on the water cooler within a day! Sounds crazy but, it is true. My mom noticed immediately and she did what any concerned mama would do, and took me to see the doctor. After some blood work and sitting in a cold exam room for over 20 minutes, the doctor, who resembled interior designer, Nate Berkus, walked in and with his back turned to me said, "yup, you have Type 2 Diabetes." (To this day, I have an aversion to any show featuring Nate Berkus because of this). Without compassion or without hesitation, he said I needed to improve my eating habits and lose a lot of weight immediately if I wanted to stay alive past age 30. On that day, I weighed about 200 pounds. I WAS overweight. I DID need to improve my diet and activity choices. So in my mind, the doctor's diagnosis and sheer anger was valid. I was angry with myself. All I remember now from those really depressing days following my diagnosis was hunger, shame, and crying to the constant loop of "Titanium" on my purple iPod Nano. I was also prescribed about 4 oral medications to help control my sky-high blood sugars. I went back to my studio apartment in San Francisco feeling defeated.
And, time passed.
About a year and a half went by and I had gone from 200 to 130 pounds. The thing was, I wasn't doing anything different besides taking 4, then 5, then 6, then 7, then 8, then 9 pills daily to control my high blood sugars. But they didn't help. Logically, losing weight should have helped control my diabetes. On the other hand, it only made it worse.
Eventually, I ended up seeing a new specialist who shockingly re-diagnosed me with Type 1 Diabetes. She was surprised no other doctor had ever tried to test me for Type 1 because my symptoms were obvious. I was taken off all oral medications and instead put on insulin injections multiple times a day.
But, I was still neglectful and still in denial about me being sick. I rarely took my insulin. Usually only when my mom forced me to. But when I did, my appetite would increase so I would rather just not deal with it and not take it at all.
I continued to lose weight because without insulin, my body was trying to get rid of all of the sugar inside me. My body was basically attacking and eating itself. Sounds gross. It is. And very very scary.
By now, I was in a new, healthy relationship (with my current Instagram Boyfriend), had just started an exciting new job with, funny enough, an interior designer, and I was able to wear whatever I wanted because I was thin for the first time in my life. And I'm not gonna lie about that part because I think it's one of the reasons I felt okay about neglecting my health for so long. I was able to walk into any store and find my size without trouble and everything fit! It was a dream come true!
I felt pretty and sexy, things I had never felt before.
Things seemed to be going well, except, I physically did not feel good. At all. My vision was extremely blurry. My mouth was always so incredibly dry, as were my hands. My knuckles were sometimes bloody and raw from how dry they were. I was still peeing constantly and my legs would swell up until they were almost purple.
At one point, I went on vacation to Mexico with my parents. The year before, we had gone zip lining, hiking, horseback riding, but this year, it was out of the question. I had almost very little muscle left in my legs (seeing as my body was breaking down slowly) that sometimes, I would be standing still and all of a sudden, fall over.
There were also times where I would wake up at 8am, eat breakfast, go sit on the couch, fall asleep and not wake up again until 5pm. And, even then, I'd crack open one eye, and could not for the life of me get up.
In mid October of 2015, Joey and I went on a day trip to San Francisco. As soon as we got there, I could only take a few steps without wheezing and having to stop for air. I felt like I was running a marathon. Joey suggested several times that we go home, but I shrugged it off and said it was nothing.
Later that day, I had the worst headache I have ever had in my entire life. We decided it was probably best to head home after that. But on the drive, it became so bad, I laid down, and pretty much passed out. When I woke up over an hour later, I had the intense urge to throw up. And my headache, somehow was worse than it was before, even after a couple of pain pills. My poor Joey was speeding and worried like crazy.
He got me outta the car and I ran to the bathroom in my house, thinking I just had to throw up and I'd feel better. Even with me telling Joey I would be fine, he went in to my parents room to get my mom. They immediately drove me to the ER.
A lot of this is a blur, but I remember being admitted almost immediately, answering a few questions, and then somehow I ended up in a gown, in a bed, begging for water. They gave me ice chips and I couldn't get enough of them. The one part I remember most clearly has stuck with me every day of my life and brings tears to my eyes even just writing this.
The ER doctor looked at me and bluntly said, "if you would have gotten here even an hour later than you did, you would not have made it. You would not be here right now."
I was in the intensive care unit for about a week. My mom stayed with me as much as she could. Pretty much my entire family, boyfriend, and best friends came to see me. I love them all so much. Each and every one of them are the reason that I wake up every morning and deal with my Diabetes.
What I suffered through that night, Diabetic Ketoacidosis or DKA, is very deadly, but unfortunately common. Diabulimia isn't the only cause of it, but it is a major issue when it comes to young Type 1's coming to terms with the disease.
I'm still learning each and everyday how to avoid falling into this situation again. It is an everyday battle, but it is always comforting to know that there are welcoming communities all over social media, as well as encouraging medical professionals that want to help.
Type 1 Diabetes is no joke. I say this to you as someone who was minutes from dying from this horrible disease, it sucks, but it is so worth it to get past the numbers, the needles, all of that crap.
Your life is worth it.
Even right now, it's hard to admit that I had an eating disorder. But I did. I'm not ashamed. I want to share my story. And I hope this is the start of a crucial dialogue surrounding the young adult community of Type 1's.
Please feel free to contact me with any questions or comments you may have regarding the topic. I am NOT a professional nor can I offer medical advice, but I can relate.
Thank you for reading everyone. This was an emotional post for me to write, but I know that it was important for me to do. I hope this was helpful and educational to at least one of you fellow dia-badasses out there!
-The B of V