For more than 27 years, I lived undiagnosed with Pure O, a form of OCD that is associated with horrible intrusive thoughts.
I sometimes wake up certain that I’m dying. It might be 4am, with my limbs shaking and vibrating down to the tips of every toe, my whole body shrieking like a human ambulance with its sirens at top volume and its lights blinking blinding red and blue. As if with a megaphone, my brain seems to holler, “Grab the juice, THIS INSTANT, or perish.”
With type 1 diabetes, these low blood sugars are so normalized that I neglect to acknowledge them as traumatic. They can occur at all times of day, for all sorts of reasons – perhaps because I miscalculate the carbohydrates in a meal and thus overdose on my insulin, or perhaps because I exercise more than usual that afternoon. I experience just as many cases of the opposite extreme: high blood sugars might be caused by an insufficient insulin dosage or stress or a case of the common cold, and they make me dry-mouthed, exhausted, and irrationally irritated at everyone and everything.
If an innocent chef adds surreptitious syrup to his soup and I don’t notice, I am suddenly unable to properly calculate the proper tip percentage on the bill, with the numbers distorted in the brain fog that accompanies high blood glucose. If the subway breaks down and I am unexpectedly forced to walk to work instead, I might quickly find myself unable to walk at all, stuck sitting and gulping applesauce as my blood sugar plummets.
In the long run, high blood sugars are far more detrimental. Their complications include blindness, amputation, heart disease, kidney disease, stroke, and a bevy of other ailments I prefer not to think about.
But in the moment, low blood sugars are far more dangerous, with the potential to cause seizures, unconsciousness, and sudden death. Though more petrifying and unpleasant, lows are quicker to fix, while highs, though more cumbersome than critical, can take hours to resolve.
A low blood sugar during an interview or a first date would be disastrous. And yet, nervousness causes glucose to rise. Nine times out of ten, in my attempt at proper preparation, I find myself stuck in the thralls of one of the two extremes; by trying to avoid one disaster, I slip into its opposite.
I fall off-balance again and again. Life with diabetes is a persistent process of falling and balancing, falling and balancing, like a tightrope walker with the weight of ten tons strapped to her back, feigning poise on the thin line in between the slips.
That symbolic tightrope is understandably difficult for outsiders to fathom. The finger pricks and injections are more easily comprehensible, so people tend to fixate on the needles. “You take shots?” they always ask. “Do they hurt?”
I never know how to answer. Saying “no” seems to minimize the severity of the disease. Saying “yes” is overly dramatic. The truth is somewhere in the middle: they sting terribly sometimes, when I accidentally hit a bad spot. But other times, I barely feel them, or the pain doesn’t register because it is so familiar.
“And how often?” people ask, incredulous when I explain that I stab myself with every meal and snack, plus once every evening at 7pm, plus anytime throughout the day when something is off. They’re even more surprised to hear that each dose is different. Pinpointing the proper amount of insulin requires complicated mental math puzzles based on guesswork.
The insulin is as clear as water but smells robotic, not like something human that should be delivered to my veins. I’ve injected gallons of the stuff in my 12 years of diabetes.
I could build skyscrapers from my 12 years of syringes. I could fill mansions with my 12 years of small paper strips used to test my glucose, which have a tendency to spread as insidiously as glitter through my pockets, bags, and drawers, under tables and pillows, between magazine pages.
I recently spotted one of these paper strips on the floor in a public restroom, left behind by a stranger, and my eyes welled up with tears. Though I carry my diabetes with me constantly – in strips, meters, lancets, needles, insulin vials, juice boxes, everywhere I go – I mostly keep my illness hidden. I forget that other people carry the weight of diabetes with them, too.
Diabetes is an easily concealable disease. In addition to a tightrope walker, I am a skilled magician — I stick syringes in my stomach on crowded subway platforms with no one noticing and maintain dinner conversation while mentally calculating insulin doses at the same time. All people with diabetes develop individualized survival tactics so we can manage our day-to-day responsibilities just like everybody else, even when our blood sugars are off-balance. We learn to function while not feeling well — and even to excel extraordinarily.
Ultimately, this manageability is a blessing. But it is also a burden. The performance act feels like a mandatory duty: as if I am required to stay smiling on my tightrope rather than admit frustration, to work magic tricks rather than make others uncomfortable, to pack my diabetes up tightly and to suffer under its weight in silent solitude.
That’s the hard part. It’s not the literal weight of the sharp, worldly things, but the symbolic heft of the illness. It’s the lonely strain to keep myself alive, which other people don’t have to think about on a daily basis, let alone an hourly one, let alone at 4am when they wake up shaking in the dark.
In those 4am moments, my body is not only the shrieking ambulance, but also the fire. I sweat through my shirt and soak my sheets, my heart pulsing like a flame, burning hot.
The last time this happened, it lasted longer than usual. While waiting anxiously for the gulped box of juice to kick in, I lay panting on top of my covers before finally peeling off my damp pajamas, desperate for relief. Finally, I sat up against a pillow and began constructing this essay in my head, thinking about the symbolism of finding the words for this complex disease only while vulnerable, unguarded, and shaking silently while the world slept around me.
I spent years resenting my body, berating it, feeling guilty and ashamed of it, and attempting to minimize my illness with avoidance and perfectionism in alternating spurts. None of these tactics were productive. Type 1 diabetes is an autoimmune condition (unlike type 2 diabetes, which accounts for the vast majority of all diabetes cases). Its causes are unknown. It cannot be prevented. It cannot be cured. And I cannot dodge or dismiss it, no matter how I try to resist its weight.
The only thing that lifts the load is looking for its subtle lightness. Within the rigidity of my medical regimen, I’m slowly finding flexibility; under its fears and frustrations, I’m seeking self-forgiveness and grace. Like my blood sugars, life is always a balancing act, and I’m unveiling the values that lend stability amid the slips: diabetes has taught me to prioritize self-care, to practice gratitude, and to approach others with keen awareness that they carry invisible burdens of their own.
When we dare to open up and unpack our unwanted baggage, we unzip its buried blessings. Amid the grievances, every burden is packed with gifts: symbolic lessons that make daily life more meaningful. If that sounds sappy, that’s because it is — I have to get my sugar somehow.