If you told my teenage self that going to a competitive arts high school would be the beginning of a lifelong battle with perfectionism, I’d have run ink-stained hands through my unwashed, box-dyed red hair and laughed in your face. Perfectionism was a term that conjured neat, tidy Type A people who were motivated by grades and high-paying jobs, and I was going to be an artist, man. I didn’t care about that stuff, okay? My life was going to be about my art.
“Perfectionism was a term that conjured neat, tidy Type A people who were motivated by grades and high-paying jobs, and I was going to be an artist, man.”
Adults really love it when you’re a kid making art, but the moment you enter the college-prep years it suddenly stops being so cute. “But what are you going to do for money?” was the big question, and being a teenager, I didn’t know and I didn’t care. But I also didn’t like being scrutinized, forced to reckon with questions that made something I love seem trivial and silly. Then something happened: My art won an award, and the tenor of these conversations changed completely. Suddenly, I was no longer a starving artist trying to make it, but an exceptional talent who deserved the spotlight.
The message was loud and clear: Unvetted, my value was in question, and I’d have to defend my choices and interests against pity, concern, and sometimes outright hostility. But if I could prove that I was already “good,” I’d get support, admiration, and respect.
For most of my adult life, living by these rules of achievement worked for me. I became adept at seeing the ladder of success in every scenario, identifying the finish line and treating it not as the end of the race, but the launching pad into the next one. I needed to win. Because winning was how I could tell if I was good at something or not.
“I needed to win. Because winning was how I could tell if I was good at something or not.”
So when my daughter was diagnosed with type 1 diabetes, I left the hospital planning to approach her care with the same attention, determination, and metrics for success that I’ve used everywhere else in my life. We’d count the carbs, calculate the insulin dose, monitor and adjust, and in no time, we would be the proud parents of a thriving kid with a perfect A1C, simple as that.
I don’t think I have to tell you that it didn’t go exactly as planned. Of course it didn’t! We were an able-bodied household who had never experienced chronic illness before, let alone one that came with so many medical supplies and technologies we’d have to become experts in overnight. Insulin is a hormone that’s produced by your pancreas? News to me! And now I had vials of the stuff stashed in my butter drawer.
We were living that recurring nightmare where you show up to school and learn you’re about to take a final for a class you hadn’t attended all year. Instead of having an appropriate response like explaining there had been some mistake or simply screaming and running away, I was sitting in the hallway with an Intro to Endocrinology textbook in my lap, cramming, convinced that I could somehow still get an A. I had to. Winning, being the best, reaching the highest measure of success was how I proved I was doing a good job, and this was the most important test yet: The one that would determine if I was a good mom.
Trying to win
Type 1 diabetes is an autoimmune disease where the body stops producing the insulin that tells your cells to turn blood sugar into energy. Blood sugar, or glucose, comes from the food we eat, and without insulin it can build up in the bloodstream, causing myriad long and short-term complications that can ultimately be fatal. Management for type 1 has come a long way in the last hundred years, but living with the condition is still a practice of full-time, all-consuming care that involves a combination of monitoring, predicting, and responding to the symptoms of glucose fluctuations all day every day, 24/7, 365. While the crash course in T1D medical care we got in the hospital gave us a few charts and formulas to follow, the educators also stressed the unpredictability of the disease, the many invisible variables that could affect outcomes. “It’s an art, not a science,” they said.
“The educators also stressed the unpredictability of the disease, the many invisible variables that could affect outcomes.”
If you’re a parent, you might recall the sleepless nights of the newborn phase, the hours spent panic-googling the most mundane events. Every basic task seemed suddenly rife with complications, the whole world narrowing to a hamster wheel of survival. As a dedicated perfectionist, I struggled with this. The measures of achievement –– a successful latch while nursing, sleeping through the night –– were inconsistent, and I rarely had the satisfying sense of progress, let alone accomplishment, that had characterized all the other major phases of my life. I raced through the newborn weeks, letting the memories fade into a sleepless blur.
But it all came rushing back the first week after our daughter’s diagnosis.
We had always been relaxed about food, and now every snack, drink, and meal was a math word problem with a trick answer. Every meal was timed and frantic, as we tried to calculate carbs and convert measurements, eyeballing how much we think she’d eaten and doing our best to turn that into a number we could plug into her dosing formula.
“We had always been relaxed about food, and now every snack, drink, and meal was a math word problem with a trick answer.”
We’d watch her blood sugar spike after eating, then wait with bated breath until the insulin peaked at an hour and a half, letting us know if we’d over- or under-dosed, which would then require another treatment adjustment. I filled out charts and made spreadsheets, tracking every possible variable from the weather to her sleep quality to the type of carb and amount of fat or protein in each meal to try to find a pattern.
“There is no pattern,” my husband Aaron said. “There’s so much we can’t know –– hormone interference, whether she’s fighting a cold. It all affects things.”
I knew this was true, in theory. But secretly, I also thought we just weren’t trying hard enough.
“But secretly, I also thought we just weren’t trying hard enough.”
I spent the summer in a second full-time job as my daughter’s outsourced pancreas, working at a little table next to the family pool at the Y where she went to day camp. I had my laptop, a bag full of needles, alcohol swabs, Band-Aids, gummies, peanut butter crackers, and my phone open to her real-time glucose reading. I tapped back and forth between text messages with her counselors and other moms of T1D kids, scrolling through Reddit and Instagram and YouTube to troubleshoot her numbers, trying to make sense of highs that would last despite more than enough insulin, or inexplicable lows that no amount of snacking could seem to reverse.
I called our pediatric endocrinologist’s office multiple times a week, and got on a first-name basis with the nurses, who all seemed entirely too laid back about my questions. After our daughter was asleep, I’d rant to Aaron, recounting every stressful minute of the day over a dinner I couldn’t bring myself to eat.
“Just what are you trying to achieve here?” he asked me. “What is your goal?”
“I want her to be healthy!” I said. “We need to be able to do this so that we can teach her how to do it!”
“But,” he said, exasperated. “That’s exactly what we’re doing.”
We stared at each other, equally as mystified at how we seemed not only to be on different pages, but in different books. Different genres. Maybe different media entirely.
Trying to be good
When the doctors had told us that diabetes care was an art, not a science, Aaron heard a message about flexibility and fluctuations; I’d heard a challenge. While we were having to make constant adjustments to her insulin-to-carb ratio, he’d understood it to be the nature of the treatment. He was expecting trial and error.
“When the doctors had told us that diabetes care was an art, not a science, Aaron heard a message about flexibility and fluctuations; I’d heard a challenge.”
Meanwhile, I’d been putting everything into a spreadsheet, expecting to find the elusive formula through sheer obsessive attention. I didn’t believe him, or the doctors, or even the other diabetics I was now following on social media who all said the same thing about “good days and bad days” being inevitable. That simply wasn’t good enough.
Perfectionism is about outcomes. Without a clear and obvious goal to reach, the only outcome I could latch onto was the percentage of each day when her blood sugar was within the range our endo had set for us. If the app told me that we’d been in range for less than 90% of the day, it felt like a grade –– a very bad one. And spoiler: We were under 90% a lot.
I’d agonize over this, obsessively reviewing the day’s data, desperate to crack the code. When I couldn’t find answers, the day would end in tears or panic attacks. “Why are you moralizing this?” Aaron kept asking me. I couldn’t help it. That number was the measure of whether we’d had a good day or a bad day –– which to me, was simply another way of saying whether I was a good mom or a bad one.
“That number was the measure of whether we’d had a good day or a bad day –– which to me, was simply another way of saying whether I was a good mom or a bad one.”
But after months of being with our daughter 24/7, and even after getting on an insulin pump that could make real-time adjustments to her background insulin in a way that injection therapy cannot, we still had days where her numbers didn’t make sense. No matter how rigidly I stuck to a routine or schedule, diabetes would not follow suit.
I would do everything “right,” and then some unknown variable would come in and wreck the outcome, tanking her glucose or spiking it in a way we couldn’t have predicted.
The stress of fighting this reality was wreaking real havoc on my own health: I’d lost my appetite completely and would often forget to eat, and I was sleeping less than five hours a night, rarely consecutively. I was constantly near tears, and it took very little to push me over into full-blown panic attacks. Everyone around me kept stressing the importance of taking care of myself so that I could take care of my daughter, but I was so convinced that even the smallest break would only make everything worse. How could I be anything less than vigilant? What kind of a mother would that make me if I left her care to anyone else before I’d figured it out completely?
“What kind of a mother would that make me if I left her care to anyone else before I’d figured it out completely?”
About five months in we had a week of plain bad luck. The infusion sets we use with her insulin pump kept failing, and after hours of mystery high numbers, we’d discover there was blood in her cannula, or a kink in the line, or a bubble in the pump that needed to be pushed out.
We replaced the sets and flushed the lines, a process which ended up running through our medical supplies at nearly three times the rate our insurance covers. Our girl had come so far in her anticipatory dread for the needle punch of pump and CGM changes, and we were blasting all that emotional progress out of the water every time we delivered the bad news that we’d need to do yet another site change that week. Her skin was pocked and red and inflamed, and it took everything in me to appear calm and competent as she sobbed.
I had so far been able to keep our daughter from witnessing my panic attacks, but I was so depleted that week that I wasn’t able to make it to our basement from the kitchen one day before I was on the floor, hyperventilating. I didn’t even realize she was there until I felt her little arms around me.
“It’s okay. You’re doing a great job, Mommy,” she said. “You’re a good mom having a hard time.” She ran her tiny hand over my hair, stroking it softly.
“‘You’re a good mom having a hard time.’ She ran her tiny hand over my hair, stroking it softly.”
She was parroting me, repeating back to me what I’d said to her in her own moments of struggle (shout out to Dr. Becky!). Like so many other times since her diagnosis, I felt a combination of sadness and pride. She has had to take on such an incredible amount of responsibility, and she’s done it with a resilience that feels too big for such a small person. It was unfair, and yet it was also inspiring.
In that moment, it shifted my goals more clearly into focus: Being a good mom wasn’t going to hinge on whether I could “win” diabetes; being a good mom was about being there for my kid, and giving her the tools to manage her diabetes herself one day –– the physical symptoms, but also the emotional ones.
Changing perspectives
I follow a ton of T1D creators on social media, and I’ve learned a lot about the toll that chronic illness can take on your mental health. The care is relentless, and the unpredictable nature of the disease never totally stops, even for adults who have been living with and managing it their whole lives. One such person posted something that really resonated with me after this experience in my journey as a perfectionist entering into medical motherhood: “In our house,” she said, “We believe in treating the person first, and the diabetes second.”
““In our house,” she said, “We believe in treating the person first, and the diabetes second.””
It can be easy to reduce my daughter’s whole day into the glucose chart, but her life is so much more than that: It’s our wake-up song and picking out her outfit for the day. It’s the music she chooses during breakfast and the questions she asks me about spelling and street signs. It’s the news she shares about her friends and the facts she’s learned about slime she delivers with pride, excited to get to teach me something. It’s her compassion and kindness, her ability to notice when someone is struggling, compelling her to step in and help.
“It can be easy to reduce my daughter’s whole day into the glucose chart, but her life is so much more than that.”
Somehow, during all the chaos of medical supplies and glucose tracking, I’d been teaching our daughter how to treat a major aspect of living with a chronic illness: The mental fatigue and emotional exhaustion.
I will never know what it feels like in my daughter’s body to experience the physical reality of her disease. But I will know, acutely, how it feels when the numbers don’t correlate to the treatment, or her tech fails and insurance gives her a hard time, or the frustration at having a low alarm go off just after climbing into bed after a long day, and the impatience of getting back up and force-feeding herself a fast-acting carb when all she wants to do is go to sleep. Because right now, I’m experiencing that for her.
I’m the one muddling through the impossible math, thinking ahead about dosing and timing so that she can just enjoy the party or restaurant like everyone else. And when she gets angry about her diabetes, demanding to know why I have a pancreas that works and she doesn’t, and why she has to have all these robot parts stuck to her body and I don’t, I am the calm space for her, the rock she can rail against that might crack sometimes, but will never break.
“I am the calm space for her, the rock she can rail against that might crack sometimes, but will never break.”
We hugged for a long time that day on the kitchen floor. She offered me a drink of water, and asked if I needed a snack. Then we talked about it –– how hard the week had been, how hard diabetes could be, how hard it was to stay calm when things kept going wrong.
“Do you want to dance it out?” she asked. “Or we can scream and shout! Or make a drawing about our feelings?” She was offering the coping strategies we use when she’s having big feelings. It was so strange, to hear how we’ve taught her all this grace and love, even as the world had seemed to be crumbling around us.
“If we can let go of the idea of perfection, maybe we make room for something even more valuable.”
I’d been so busy striving for perfection, convinced that anything less was a complete failure, that I couldn’t even see all the incredible things she was learning –– that I had been teaching her. If we can let go of the idea of perfection, maybe we make room for something even more valuable: The ability to see clearly everything that’s truly good around us, even without an award or accolade telling us so.
Perfection is a myth. Some things don’t have a clear finish line, and there just isn’t a single definable outcome at all; there’s only the process of experiencing it well. I can’t “win” diabetes anymore than I can “win” motherhood. I can only live them the best I can.
Stephanie H. Fallon is a Contributing Editor at The Good Trade. She is a writer originally from Houston, Texas. She has an MFA from the Jackson Center of Creative Writing at Hollins University. She lives with her family in the Blue Ridge Mountains of Virginia, where she writes about motherhood, artmaking, and work culture. You can find her on Instagram or learn more on her website.
