Treating My Diabetes Meant Facing My Eating Disorder All Over Again

I posed the question to her, earnestly, seriously: If given the choice, would she rather gain weight or would she rather die?

It’s 3 o’clock in the morning, and it’s time to tell the truth.

It’s April, muddy snow liquefying in the darkness outside. I’m bent over my kitchen counter, hands shaking, bleeding from my fingertips as I gracelessly stab at a tiny foil target with a tiny plastic straw. It doesn’t help that I’m approaching the doorstep of unconsciousness, black inkblots floating in my vision.

It definitely doesn’t help that, having arrived at the moment in which I must save my own life, I find myself face-to-bright-red-face with Elmo, who beams rapturously up at me from the front of a box the size of a toddler’s palm.

Elmo—or rather, the eight ounces of organic apple juice inside this little box—is what will save my life, because I am in a state of urgent hypoglycemia. I am Type 1 Diabetic, which means that I must have a steady flow of artificial insulin pumping through my blood at all times in order to stay alive. I have miscalculated my dosage tonight, injecting too much insulin and then eating an insufficient amount of dinner, so I woke to the alarm that was tripped by the sensor inserted under my skin. The alarm told me that I needed to drag myself from my bed, prick my finger to confirm the mg/dL of glucose in my blood, and drink these eight ounces of juice in my hand. I need to drink the juice, or is it very possible that I will die.

I also cannot drink the juice, because I am two different kinds of Sick.

The origin story of the first sickness, which carries a diagnosis of either Atypical Anorexia or Anorexia Nervosa depending on my weight at any given moment, is a relatively common one: The year I turned twenty-seven, I was hurt by two different men in two different ways, in quick succession. Suddenly, I found that it was no longer possible to inhabit the blasted-apart body to which these things had happened. I sought to survive by escaping my body, which required destroying it, through the passive self-violence of deprivation. I starved myself until my heart began to falter.

Friends and family intervened. I agreed to seek medical treatment. I surrendered to a team of clinicians and therapists. I grew back into my body. The summer after I completed treatment, a handsome friend-of-friends came into sharp and sudden focus. He began to bring me flowers, wine, chocolate, spices, wild berries he had picked. I regained the last of my recovery weight, eating with abandon as Will and I fell in love in restaurants and coffee shops and smoky bars across the city.

I began to speak of my first sickness only in the past tense.

It would be two years before the second sickness broke through its genetically planted bud and began to unfurl its long, creeping vines through my body.

The summer I turned twenty-nine, Will and I traveled to the Sangre de Cristo mountains in New Mexico. A few days into the trip, I went out for a run and promptly collapsed, my lungs aching and my limbs like lead. I crawled through the red desert dust on my hands and knees until I could stand and walk back to the house, where we decided that it was altitude sickness.

But for the next five months, long after we’d returned to our home at sea level, my body continued to fall apart. I began to have trouble climbing the stairs to our second-floor apartment, then lifting the keys to the lock. I stopped seeing friends. I struggled to get through a workday. I wilted into a more emaciated body than ever before, despite eating constantly and ravenously.

By November, I was skeletal. My spine-and-elbows appearance was regarded with deep suspicion by my friends and family—for the loved ones of an eating disorder survivor, apparent signs of relapse come as no surprise. I was met with tired half-smiles whenever I listed excessive hunger—polyphagia, I would later be told—among my myriad symptoms. My old self-starvation tactics were the obvious answer, in their minds, to the question they were too afraid to ask outright.

And I was, actually, starving to death—had been starving since that day in New Mexico, when a fault in my immune system caused it to begin targeting and killing off the beta cells in my pancreas. My blood was becoming acidic. My body was cannibalizing itself for fuel.

Doctors were unmoved by my primary complaint of “tired” and unconvinced by my emphatic claims that I was—I swear!—eating. It was only in December, when my period had disappeared for the second time in five years, that it occurred to anyone to run some tests. When the blood work came back, I was sent to the emergency room.

The hours of stabilization passed in the hospital’s soundscape of beeps and drips, Will and my father slouched side-by-side in chairs, and a rotating cadre of nurses and doctors for whom the crisis of my body could not have been less remarkable or more routine. Diabetic. Type 1. Insulin-dependent. Patient is not presently in a state of ketoacidosis. Patient is conscious. History of Anorexia Nervosa but no concerns at present.

At some point, a sweet-faced, grandmotherly nurse breezed through the curtains to check on my saline IV, pumping busily away in its efforts to dilute my acid-sweet blood. She introduced herself, cheerfully recorded my vitals, and told me about her grandson, a Type 1 Diabetic like me and a happy child living a full life, despite the frequent scares and hospitalizations. We laughed about his largest sorrow: being the only child at the birthday party not allowed to have a cupcake.

Then—speaking of cupcakes—bending over me to adjust my bed, she asked how I was feeling about the rapid and significant weight gain that was heading my way, as a result of the insulin injections. I leaned away from her, stunned.

In that moment, I saw it all unfold before me again: my body growing and softening, thickening, stretch marks appearing, clothing becoming tight, as had all happened before. My chest seized with panic. Could I do this a second time?

The nurse smiled down at me. Oh, honey, you’ll be fine. You’ll just need to be disciplined, count your carbohydrates, and always track what you eat.

My response was visceral, animal, frightening to everyone in the room. The nurse hurried backward through the curtain as I sobbed. Will crossed the room to crouch beside my bed and take my hand. The force and the color of my reaction shocked us both—wasn’t the loss of this sick, hard-to-look-at body a good and necessary one? Wasn’t I a person who had learned to cope with weight gain years ago? Shouldn’t the prospect of growing stronger and healthier fill me with joy? But instead, the abrupt realization that I was about to face this weight gain not with the gifts of freedom and joy around food that had been given to me by recovery, but alongside discipline and carb-counting, flooded me with horror and grief.

Comorbidity is common when it comes to Type 1 Diabetes and eating disorders. T1D puts a patient at high risk for developing disordered behaviors over the course of their illness, because life for diabetics involves obsessive self-surveillance and non-stop monitoring of their (tightly controlled) food intake. Eating disorder recovery requires exactly the opposite: intuitive eating and the ability to feed one’s self freely according to appetite, mood, and nutritional needs. Adherence to any form of restrictive diet—like the ones prescribed by doctors to diabetic patients—often leads to a life-threatening relapse.

The force and the color of my reaction shocked us both—wasn’t the loss of this sick, hard-to-look-at body a good and necessary one?

I was discharged that evening, needles and insulin and pamphlets full of diet tips in hand. Numb and exhausted, I shakily made my way home to begin my new life with my second disease.

A few weeks later, I stepped onto a scale in my endocrinologist’s office and watched the medical assistant do a double take. Squinting at my chart, she asked if was I sure that my weight had been written down correctly at the hospital. She had me step off, Let’s try again, there must be an error, it would be very unusual to have gained this much weight so quickly. When the number appeared a second time, hot humiliation prickling the corners of my eyes, she wrote it on her clipboard and underlined it three times, saying Wow.

On the drive home, my blood sugar plummeted. I pulled to the side of the road, dizzy and disoriented, reaching for my juice box. As cars sped by me, honking, and my vision began to cloud, I found myself doing something I hadn’t in years: I turned the box over in my hand, searching for the calories.

In January, emerging from the post-diagnosis fog of shock and grief, Will and I decided to get married. He remained steady, kind, calm—making me breakfast every morning, and dinner every evening, and reminding me to check my blood sugar and take my insulin. To eat something, eat something, eat something. In February, bright and icy, we went to buy our wedding rings.

“It should be tight,” the woman behind the jewelry counter kept insisting, “the ring should be nice and tight so it doesn’t ever fall off.” But still I bought my ring a half-size too big, saying it was because my fingers might swell, but knowing it was because the sensation of tightness would be intolerable for me—a waistband’s indentations in the fat of my stomach or an elastic hair tie compressing the flesh of my wrist, unbearable.

To feel, physically, the exact point in space where my growing body met the rest of the world. To be made aware of the exact size and shape of myself—I was running away from this as much as I was running toward anything.

So now, my thin gold wedding band is loose on my finger, sliding precariously up and down between the goalposts of my knuckles whenever my hands are cold or wet. If it does fall off, lost forever in a snowbank or down the drain of our kitchen sink, it would be so that I could feel smaller.

The first Sickness and I, we have been willing to risk everything. We have been telling this lie about my body at all costs.

*

The oven clock says 3:14. I could wait this out. I could switch off my sensor, rip the tiny needle out of my skin and simply refuse to prick my finger until the morning, if I live through the night. It’s easy to lie about something that’s happening only inside my body. These are all things I have done before, to avoid the negligible calories in a child’s juice box.

I have been standing, paralyzed, at the crossroads of my two diseases, one foot in each kind of death. Where they come up against one another, my monitor screaming URGENT LOW, is where my private struggle plays out over and over again. Where I try and fail, in secret, to drink eight ounces of juice.

When I seek to replicate healthy thinking for myself—meaning honesty and normalcy and freedom from my first kind of Sick—I think of the day I spent weeping in the office of my no-nonsense dietitian. A woman with a severe silver bob and an even more severe lack of patience with me—Patient may struggle with honest self-reporting written neatly under the “Barriers to Meal Plan Compliance” banner on her notepad, angled toward me on her lap. I had come to her panicked and distraught about the outward expansion of my healing body. She finally asked, frustrated, Well, would you rather gain weight or would you rather die?

I nodded tearfully, a pitiful non-answer, hoping that appearing to comprehend the gravity of my situation would be enough to satisfy her, and that the conversation would be over.

Afterward, crossing the parking lot with the friend who had driven me to the appointment, I posed the question to her, earnestly, seriously: If given the choice, would she rather gain weight or would she rather die?

In the years since then, I have forgotten dates and weights and meal plans, but I have never forgotten the look on my friend’s face when I asked her this.

I see it now, alone in my kitchen at 3:16 in the morning. Will sleeps through most alarms, and it would be easy for me to maintain this little fiction for one more night, secretly gambling with my life while pretending compliance.

Patient may struggle with honest self-reporting.

To tell the whole truth about my health entails accepting a gloomier prognosis, of course. The outcomes are frightening for diabetics with active eating disorders—neuropathy, blindness, organ failure, an earlier and more painful death. But telling the whole truth is also the only path to any possible escape from these fates. If I don’t want the secrets and the self-delusions of the first disease to be the end of me, it is time to face the facts of the second disease.

It’s 3:20. The coldness of the juice is a shock to my throat. The sweet-tartness of it braids my mouth into a pucker. I fold forward, resting my forehead against the sloped edge of the counter. I breathe. My heart rate slows.

After a few minutes, I crawl back into bed, kiss the shoulder of my sleeping husband. In the morning, I will be honest about both the frequency and the ambivalence with which I have been touching death. I will speak about my eating disorder in the present tense, and in doing so admit to him that I need help. I will come clean about the juice.

I am two different kinds of Sick, and I hope to someday be only one kind. I can no longer pretend a sickness into the past, but I can start here: I can write this, and I can drink the sugar I need to stay alive for another day.

I can tell the truth about my body.

I can save my life in two ways.