When I found out I had Type 1 diabetes, I had just finished eating a slice of pound cake. I still had powdered sugar stuck to my fingertips when the phone rang.
In the months before that phone call, I had become insatiably hungry. I would finish eating an entire meal — something as filling as pad Thai or Indian curry — and instantly want to eat the same thing all over again. This unending hunger would have brought me guilt and pain if it had struck in my teenage years or early 20s. I would have wrestled it into the back of my mind and denied it what it called out for. But by 30, I had ended that battle and agreed to give my body what it told me it wanted. And it had lately been telling me it wanted everything.
So that morning, when I went to my polling place to vote in the 2014 midterm elections, I bought a slice of pound cake and a chocolate chip oatmeal cookie from the kids outside selling baked goods to eat as my second and third breakfasts.
I had been to the doctor just days before. The hunger and other strange symptoms that had cropped up amid the stress of planning my wedding last September hadn’t faded after it was over. I was waking up in the middle of every night to pee, something that had never happened to me. I found myself craving a glass of water at night the way I imagine some people crave a cigarette. And when I weighed in at the doctor’s office, I had lost enough to dip below 100, a scary number for me even at 5 feet tall. Yet the doctor told me unequivocally that I didn’t have diabetes, despite a nurse’s suspicions. You’re too old, she said. You’re not sick enough. You’re not overweight.
But as everyone knows, when the phone rings from your doctor’s office it’s like getting the thin envelope from college admissions. It’s never good news. I dusted off the sugar as best I could on the side of my pants and picked up. I don’t remember exactly what the nurse said, only that she told me I had diabetes, my blood sugar levels were through the roof, and I had to get to a hospital as soon as possible.
I left the cookie on the counter and, forgotten, it grew hard and then moldy before I finally threw it out months later.
I’ve struggled with accepting my body for most of my life, but I remember the exact moment I first started really questioning it. It took a simple pivot. I had always looked at myself in the mirror head-on; that day, when I was 12 years old, I turned to the side and saw my baby pudge swell over the top of my pants. Oh, I thought. That’s what fat means.
It took me mere minutes to connect this unwanted fat to the food I ate. I don’t know how I made this connection; I must have drawn it from the ether of our culture, from the infinite ads for guilt-free sweets and diet plans that promise to drop pounds I had already absorbed. I reviewed my typical meals and thought to myself, This is what I get for eating Hot Pockets and chicken fingers dipped in ranch dressing.
Before that day in the downstairs bathroom when I looked at my body literally from a new angle, it was merely a vessel, a tool for playing and eating and climbing trees. No, it was even smoother than that. I didn’t think of it as separate from me. It just was me.
After that day, I began dieting. I wanted to have power over what my body looked like. I found that power in strictly controlling what went inside it. It was often, if not always, misinformed. I decided the best way to eat fewer calories was to eat less food. I would deny myself whatever I thought I shouldn’t have with the discipline of a monk. I spent one memorable day holed up in my bedroom abstaining from everything — from the moment I woke up until dinnertime — so that I could eat the unknown calories in the Chinese takeout my family ordered every Friday evening guilt-free. But the delivery that night came hours late, at which point I was close to fainting. My parents didn't have any idea — or maybe just didn't want to have any idea — what I was doing; they knew I dieted a lot but thought I was just being "healthy."
What I lost in strength (and pounds — the only other time I’ve been below 100 was one particularly austere summer during high school) I felt I gained in control. I didn’t care about giving my body what it needed. I cared about making my body look the way I needed it to.
I wasn’t unique. All teens struggle to grow into their bodies, but girls face a particular conflict as they do. Eighty percent of young girls worry about getting fat, and twice as many girls will struggle with an eating disorder compared to boys. I was never formally diagnosed with a disorder, but I was constantly obsessed with my belly stubbornly sticking out.
The need to dominate my body stayed with me throughout college. But by my mid-twenties, I started to find ways to work with it. I drew up hard-won treaties, forged a new alliance in which I exercised often and ate healthy food and in turn fed my body what it wanted. I vowed to collaborate with it.
One part of the deal was to let go of counting up everything I ate and tearing myself apart if I went over an imagined limit. No more austerity; if I wanted a cookie, I ate it and coaxed myself into letting go of the guilt. If I was still hungry after dinner, I simply had more. I began to feel something akin to what I felt as a kid: that my body was a means to an end and not the end itself. I even had moments of feeling proud of what it could do on a yoga mat or a treadmill.
Then the battle lines were drawn up once more.
Diabetes used to be a death sentence. The bodies of those with Type 1, the autoimmune disorder I have, attack the cells in the pancreas that create insulin, a hormone that ferries sugar out of the blood and into other cells so it can be used as energy. In the past, diabetics literally withered away. Without insulin, they were unable to get the sugar from carbohydrates that they needed for fuel. So the body consumed its own reserves until there was nothing left.
Then injectable insulin hit the market in the early 1920s. Today, it has become a disease you live with, but one of strict control. No one knows what causes it, and there is no cure. But there is a treatment that can prolong life indefinitely and often without pain, a privilege many who suffer from autoimmune disorders and other chronic diseases don’t enjoy.
In return for this lease on a semi-normal life, a Type 1 diabetic has to become her own pancreas. I’ve marched into another full-on struggle against myself, assuming the job of an organ that can no longer function because my body is trying to destroy it. This requires dictatorial discipline. For every given amount of carbohydrates I eat — which can be found in foods ranging from sugar to bread to beans to even milk, and which then turns to sugar in the body — I inject myself with a corresponding dose of insulin. I compute in quantities of 15: For every 15 grams of carbohydrate, I need one dose of insulin. At home, that means adding up the figures from nutrition labels. In a restaurant, I’m mostly making wild guesses.
It’s a far less lonely endeavor than dieting, even if it can be painful to watch my own health crisis infiltrate someone else’s life. My husband has created spreadsheets and apps to help us add up the numbers and keep track of them. He meticulously measures out home-cooked meals to get the right proportions. He helps me eyeball a serving of fries when we eat out. When I’m hungry and frustrated and sick of the constant calculating, he often takes on the role of my personal carb calculator.
But the calculus has to be extremely exacting. Too little insulin and my blood sugar level rises beyond the normal range. Unchecked for too long, it leads not just to the body consuming itself again, but to long-term complications with the skin, vision, and circulation, and even stroke. Too much insulin, on the other hand, and the impact is swift: a blood sugar drop, sometimes within minutes, that if not arrested can lead to seizures and even coma, but even when less severe makes me feel like my brain is encased in fog and my legs are made of cardboard.
The muscle memory of limiting what I eat came back all too quickly as soon as I had to put a number on it. With everything I consume broken up into units I can tally, I find myself imposing restrictions once again. Is it really worth taking two units of insulin just to eat that cookie? Do I really want to waste an injection on a beer? The deal I brokered with myself to gain peace meant I didn’t pay attention to the quantity and focused on the quality. Now I’ve been forced back into thinking of food as a number, a sum.
All of the things I’ve gone through can afflict men. They get eating disorders; they get autoimmune disorders. But these are particularly female experiences. Women make up three-quarters of autoimmune patients. We are told from an early age that our bodies don’t look the right way, and then later in life too many of us find out they don’t work the right way. All I’ve sought is peace with my body, but my femaleness keeps inciting conflict.
I’ve now lived with my Type 1 diabetes for a little more than five months, and I’ve met others who have lived with it for decades, if not their whole lives. For them, calculating food before eating it has become second nature. But I’m still often angry and sad that something has so quickly and dramatically changed my life. I long for the easy rapport I painstakingly worked to achieve with myself. But I know I’m going to have to learn to work with my own body again, for both of our sakes. It may be attacking me, but it also needs my help. Survival requires a new harmony. I just hope it doesn’t take another handful of decades to achieve.