Submitted by DBH Client, RL
I was travelling in Portugal, eating what I wanted and not giving a care about my health, let alone even PACKING any insulin. I ended up needing an ambulance 12 hours into my trip: I had double pneumonia, my kidneys were failing, and I was in such severe DKA that I needed go be in their ICU for the first 4 days. I have no recollection of this, but it happened. Since it was a public hospital I had to share a room with 3 other women once I was released into a regular ward. They all died, and I realized that by some miracle I had been given a second chance. In addition to that, I didn't see a single mirror for the 3 weeks that I was there - I didn't have to wear tight clothes at all either. That helped me the most in dealing with the initial edema. Though I had been to ED treatment a few times before, I knew that I didn't want help then. All the support of people who knew I was ill there (but not knowing about my ED, just that I was having diabetes problems and pneumonia), the lack of mirrors, and the fact that I didn't have to wear tight clothes helped me kick diabulimia and I'm so happy I lived to tell the tale.
Submitted by DBH Client, RL
So, you’ve been diagnosed with diabulimia/ed-dmt1? Or you’re a diabetic with a different eating disorder? And now your head is spinning, you’re not sure which direction to go, nor how your story ends. The truth is no one can tell you that yet. Nowadays, the majority of my time is spent being the pillar of recovery, but I spent nearly a decade living a warning tale of what a life of killing oneself does to the body. Though I took on the storm of diabulimia, && came out the other side a seasoned sailor, I'm also a human being born in a mortal body cursed with two chronic illnesses (type 1 diabetes and epilepsy). And thanks to the decade of damage I did to my body, I am now also the proud recipient of peripheral neuropathy, vasovagal syncope, and gastroparesis – which caused three ulcers and cyclical vomiting syndrome. So, sometimes, when the eating disorder community tells me to just embrace my body and I will be whole once more, it is all I can do to keep myself from laughing out loud. The truth is, on the other side of the recovery process for a diabulimic is not a more harmonious body; it’s a chronic ailment, as well as complications for some. However, you’ll also find a life you’re not sleeping through, where carbohydrates aren’t the enemy, and where you’re allowed to actually live, not just survive. It’s a life of joy, of happiness, and of love.
You don’t need to make the decision to change the rest of your life right now. Recovery is all about micro-decisions - an infinite list of small choices you make every day that rededicate your willpower to the courage it takes to resist that tiny voice inside your brain. You know, the one that asks, ‘is this really worth it?’ or ‘what’s skipping just one shot going to do…?’ In case you’re feeling weak right now, YES, recovery is worth it! And skipping any amount of insulin is NEVER worth it!
So now that you’ve made the decision to move towards recovery, there are some important steps you’ll need to take. The first and most important step is to set up a treatment team. A thorough treatment team includes an endocrinologist, preferably with a base level understanding of eating disorders; an eating disorder therapist, preferably with a base level understanding of diabetes; a dietician (though many pump users are required to see a CDE or diabetes dietician, we recommend an eating disorder specialist dietician for continued treatment), and a psychiatrist to handle any pharmacology needs.
Now that you have all your doctor appointments set up, you have your system of accountability set up, right? Not Quite. Eating disorders of all kinds thrive in secrecy! Diabetics with eating disorders have another layer of deception they can hide behind due to the misunderstandings that surround diabetes care. A good tactic to evade this trap of secrecy is to choose at least one friend or family member that you trust- someone that you make a pact with - no lies. The pact has to encompass all of your truths, all sides of who you are, that means even your ugliest self: the BED you sitting on the kitchen floor eating jelly from the jar with a spoon, the BPD you screaming at your compassionate and loving mother just trying her best to understand a disease she can never possibly grasp. This one honest relationship, regardless of whom it’s with, is so essential to the recovery process because the eating disorder takes root in the idea that who you are at the core isn’t good enough. We become certain that only by being disingenuous and inauthentic with the world will others accept us as we are.
Back in 2008, I was in an eating disorder treatment center in Florida. Although they had zero experience with type 1 diabetes or diabulimia, I was sure someone as smart and capable as my parents always told me I was could beat this in no time. So when six weeks came and went, and I didn’t see myself any closer to recovery, I started to crack. This journal entry is from 5 weeks into my first attempt at recovery.
“I refuse to go home until I’m better. I can’t keep screwing around. This is my life. Now is the time to do it. God, I just hope I can. How strong is my desire to live? Strong enough to gain XX pounds if that’s what it takes? As of today, no. Can Rick [my therapist] fix that, can anyone? The thought of going home at XXX pounds is the same, maybe worse, than going home in a casket! I know I’m broken inside. I just don’t know how to fix it. I’m doing everything they’re telling me too; taking my shots, eating right, opening up, trusting and sharing, even hugging people, but I just don’t know if it’s enough, I still hate myself and my body and I don’t think I’ll ever stop.”
Those kinds of thoughts don’t go away overnight. A popular phrase at DBH is ‘Just because the behavior stops, doesn’t mean the thoughts go away.’ It’s one of the reasons the aforementioned special honest friendship is so important. As you start to tackle your eating disorder it will feel threatened, making your thoughts more and more erratic. Having a human sounding board to bounce all of these thoughts off of, no matter how seemingly crazy they may be, helps you see many of these thoughts for the crazy ED voice trying to control you that they are. When I was in the recovery-relapse cycle I began having a very hard time trusting my own voice, and deciphering when to listen to my gut. Thankfully, I formed this relationship with my mother and my best friend, Luu. Between the two of them I learned to trust the insulin in my needle, the carbohydrates on my meal plan, and the voice in my head.
So you've been diagnosed with an eating disorder on top of your type 1 diabetes? It’s hardly a death sentence. On the contrary, Rikki Rogers said, “Strength doesn’t come from what you can do. It comes from overcoming the things you once thought you couldn’t.” Your story can be an inspirational memoir where one little lotus flower rises from the muck he/she is stuck in and rises to the light. All one must do is Dream it’s possible, Believe in that dream, and most importantly, always keep a hold on to Hope.
“I can do this,” I thought as I listened to the doctor explain how our daughter, Erin, had just been diagnosed with type 1 diabetes. My mother had T1D. Yes, there had been a lot of advances in technology since her passing 15 years before, but the basics were still the same. It was all about numbers – measuring food, counting carbohydrates, blood glucose levels, insulin dosages, body weight, hours of activity, hours of sleep, etc. What I didn’t understand at the time was the mental and emotional toll this focus on numbers can have on a person, especially someone predisposed to an eating disorder.
Every three months we went to the endocrinologist, and every visit felt like sitting for an exam. Her blood sugar log would be checked, her HbA1c measured (a blood test that indicates your average blood glucose for the last three months), her weight taken. She would be quizzed on how and what she was eating, how and when she was exercising. She would then receive an evaluation from each of three “examiners”: the doctor, the nurse and the dietitian. How well she performed would determine whether or not she was sent to the diabetes educator which always felt like being sent to the principal’s office. These appointments also determined how I felt and behaved over the next three months. If they went well, I was a good mother and could relax a little. If they did not, I was a bad mother and had to double down on my efforts the next three months. For Erin, this probably felt like being sent to boot camp.
I remember clearly the appointment that should have been our first red flag. Erin’s weight had gone down significantly, but her A1c had gone up. The doctor commended her on her weight loss, lectured her on her A1c, and sent us home. I knew enough about the biology of T1D that I should have been able to put the pieces together, yet there was no mention of the connection between the two. When a person doesn’t take enough insulin, their body can’t utilize the food they are eating. The glucose stays in their bloodstream causing their blood sugars to run high until they literally pee out the calories. And since the person isn’t getting any energy from their food, their body starts to eat itself. Unfortunately, without insulin the body still can’t utilize this energy resulting in continued high blood sugars and an accumulation of ketones.