It’s 2017 && for the last 7 years I’ve been working in the diabetes and eating disorders fields to educate diabetes educators, and more specifically, to re-educate Endocrinologists about the harm their diabetes education is doing to a large percentage of people with diabetes. In the last few years I’ve seen the language, “In the past we’ve seen” adopted into the talks given at conferences about diabetes education indicating that the negative behaviors were mostly in the past- something we as a community were recovering from && today I learned that ignorance and misinformation is still very much alive in the Endocrinology community, oh goody. Following is my first hand experience at my new patient appointment for an Endocrinologist.
My personal Endo has retired from seeing patients to pursue research, a blow for all her patients but a boon to the Medical research field. Wish you well Dr. C! So I made a new appointment with Dr. B who was covered by my insurance && had great patient reviews. I never go into a doctor appointment blind. I knew something was off as soon as the medical assistant started asking me questions about my diabetes history.
Medical Assistant: “You’re a type 1 diabetic?”
Erin: “Yes, for 18 years.”
Medical Assistant: “So how long have you been on insulin?”
Erin: “uhm… 18 years. I”m a type one diabetic.”
Medical Assistant: “So have they ever tried not having you on insulin?”
Erin: “WHAT!? I’m a TYPE ONE Diabetic?!”
Medical Assistant: “Have they ever tried you on glipazine?”
Erin: “That’s a type two drug?!”
Eventually she asked “Are you here for your really high blood sugars” because she saw that I had a high blood sugar last time I was in the hospital because they short changed me by 10 units on my Lantus. This is when my Mama Bear, who always comes with me to new Endo appointments, finally jumped in && politely told the woman where she could shove her misinformation! I was actually there because I’ve had so many low blood sugars in the 20s, 30s, and a couple of actual “LOW”s.
Once she left Mama Dawn && I took a couple of deep breaths to relax. Don’t judge a book by it’s cover we kept saying. Maybe he was unaware that his medical assistant didn’t seem to know the difference between Type 1 and Type 2 diabetes… I mean we only spoke to her for 5 min and it was clear to us but who knows? Maybe she’s new we rationalized… But in the pit of my stomach I knew this was a bad sign. It’s always a bad sign. The medical assistant is the gate keeper to the doctor && often times I’ve found a key piece of information about the Dr. him/herself. This time was no different.
A nice enough seeming man walked in. He extended his hand. Im Dr. B. You’ve had diabetes for 18 years? Well then let me explain to you what the difference between basal and bolus insulin is. You want to stay on your pump you say? Well “Lantus and a pump work almost the exact same” yup, that’s a direct quote. && so inaccurate Dr. B. He gets the printout from my meter.
Dr B: “You seem to eat at all different times of day. Im missing consistency.”
Erin: “Yeah, because of my gastroparesis, I eat when my stomach empties && when I’m not nauseous rather than on a set clock.”
Dr B: “So the first thing we’re going to do is stop that. You need to eat at the exact same time every day.”
Erin: “uhm… and if I’m nauseous?”
Dr. B: “If you stabilize your sugars your gastroparesis will get better.”
Erin: “uhm… my A1c is in the 7s…”
Dr. B: “that’s addequate, but it needs to be better.”
Dr. B: “I’m going to give you a diet plan you need to start following. It has a set amount of carbohydrates you cant go above it at any meal. The word for any diabetic success is consistency. Start eating the same carbs at the same time every day and don’t deviate. Say it with me, Consistency”
I looked up at Dawn at this point, was this really happening? This guy was literally the walking epitome of everything I taught against. He was harping on a set standard of rules && in fact at one point he even called them his rules and handed me a set of sheet including his list of “Safe foods” what are your Unsafe food Doc? What happens if I want to eat a piece of cake that goes above your set carbs limit? && did I mention that all this conversation happened after I mentioned that I both worked for && had a history with eating disorders.
Why are diabetics 2.5 times more likely to end up with an eating disorder? If I didn’t work in the field would I know this wasn’t a healthy way to look at food and a healthy relationship with my diabetes and insulin? How can we expect to get expert care by the modern Endocrinologist when he’s still peddling a 30 year old diabetes education?
When you wake up from a low binge my first thought is still OH F**K. Seven years ago I would have been obsessing about the calories I shouldn’t have “had” to eat. But now my first thought is what is my sugar. I don’t just call this progress. I call this recovery. In any other recovery situation you use the word binge it signals a relapse. In my case it signals a 31. That’s what my blood sugar was when my boyfriend came in this morning: 31. I was attempting to eat cookies. I hadn’t tested my sugar. I could barely speak. He asked me what I was doing. I’m sure I looked like a crazy person. Shaking, mumbling, trying to shove tagalongs desperately into my mouth. “I’m low.” was all I managed to get out. He could tell this wasn’t a normal low since I wasn’t really treating it myself (or snapping at him.) Do you need me to test your blood sugar? He asked. I nodded mutely, understanding very little of what was happening. The next 30 minutes passed in a semi blur. Conscious-ish is all I can call it. Lights were on but NO ONE was home. So I ate a sleeve of cookies. More than I needed to for a low but I was shoveling food in my mouth like my life depended on it. BECAUSE IT DID.
&& THIS is why diabetes and eating disorders are so hard to detangle, to figure out, because it’s a disease wrapped around food. My entire disease circles around decisions I make regarding food. So, yes I had a “textbook binge” this morning. Eating uncontrollably, shoveling food, no awareness for the amount or taste && then this morning my blood sugar was 321. Yes, a diabetes FUCK. But you want to know what else happened last night, I didn’t die. You think I’m being facetious? I’m not. Dying from a low blood sugar- that happens. My body instinctually shoveling food to prevent that certain death? That happens too. I no longer shame and blame myself for, no one wins in that game. So instead of waking up mad at myself for eating more calories than other people or the rest of the bullshit gammet that used to run through my head; I test my sugar, I correct && I move on with my day. That’s my recovery: Imperfection, a broken pancreas && true peace with both.
It’s #nationaleatingdisorderawarenessweek && #itstimetotalkaboutit && for me the things I want to talk about are the two things that make me a complete #girlboss in this picture. The two things that I am proud of myself for. That blood sugar && the fact that I feel pride and not simply acceptance is a true sign of my recovery journey. The second thing is that Port Scar. That ones newer… && harder for me to be proud of… harder for me to talk about. But it’s part of my story now. && it’s just as beautiful as that beautiful “perfect” blood sugar.