One aspect of T1 diabetes that I feel too often gets overlooked is the mental health angle of it all. I’ve never been a huge fan of endos, because I generally find that most of them are too “by the book” and unable to see patients for the individuals that they are. Many endos also don’t respect the many personal choices that come into play with managing T1 diabetes (whether that’s personal preference for management, tools, or whatever). But endos generally also have another nasty trait - they frequently overlook the mental aspects of having T1 diabetes.
Too many endos I’ve seen seem to think that D exists in a vaccuum, that my day is literally all about diabetes, that I can test when they say I should, and take insulin and eat in precise quantities. But life doesn’t work like that. I have a job, sometimes I forget to pack my lunch, and yes I wear flip flops because they are comfy and look cool! In reality, while it could consume my entire day, I try to make D as little of my day as possible. When I’m at work, I try to focus on work. When I’m at home, I try to focus on my wonderful family. If I didn’t do these things, I would mentally crumble.
Endos don’t understand this. They don’t understand the mental health ramifications of this disease and how it’s a constant balancing act physically and MENTALLY to make it all work. As a result of not understanding this, too many endos have downplayed or overlooked two really common mental health conditions that often come along with D - eating disorders and depression.
It’s not surprise that eating disorders (or even more mild “disordered eating”) are being talked about more and more as being a common outcome for T1s. Because our lives focus on food so intensely, often from a young age, disordered eating seems like it should be standard issue with a diagnosis of T1. While I’ve never developed a full-blown eating disorder, I have struggled with what I now know is referred to as “disordered eating” for years. I’ve been reading more and more stories online from other T1s who have also struggled with eating disorders, whether anorexia, diabulemia, orthorexia, or bulemia, or more mild cases of disordered eating. For most, these conditions seem to stem from the intense focus on food and control that T1 diabetes brings into your life.
But endos don’t talk about these. I have never had an endo, even during my teen years, broach this topic with me or my mom. No endo has ever said, hey, this might happen so look out for it. I learned about what is now called diabulemia from another T1 in junior high. It sounded…awesome. Eat whatever I want and lose weight? Why hadn’t I thought of that? I didn’t do it, but I definitely thought about it. A lot. I was a little chubby at the time and admired all the tall, thin pretty girls. Why couldn’t I look like them? Or could I? While my eating definitely became disordered to some degree, it never tipped over into anything dramatic or detrimental.
But even today, I struggle with food. Food is stressful and amazing all at the same time. I have an intense amount of guilt when I allow myself to splurge and have all sorts of little rules around eating that most would probably consider strange. I eat the same things over and over again, almost obsessively, because I’m scared to see what something else will do to my BGs. This isn’t the kind of thing that you can go to a therapist for, because in our case, food really can kill us. But how do you balance it? How do you
