25 Years Later, I Accept My Type 1 Diabetes Diagnosis

Last week, I didn’t type a single word and neglected all emails related to my furniture company. I got lost, back in Oklahoma, at diabetes camp. Across those five days where I served on camp medical staff, my role was to monitor camper blood glucose values, supervise insulin injections, and tally carbohydrates by the thousands, all in the name of giving kids with type 1 diabetes a “normal” summer camp experience.

In return for my time, camp gave me what I didn’t know I needed: acceptance of my own diabetes diagnosis—a crystallization 25 years in the making.  

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My mom and dad, as they’ve relayed to me with age, were terrified when I was diagnosed with diabetes. This was 1999, a time before artificial pancreas technology and continuous glucose monitoring, and importantly, a less proliferative era of internet context, so they were left to fill in the blank of my future with diabetes horror stories funneled from friends and family. If he doesn’t lose a limb in the next fifteen years, he’ll be blind! If he doesn’t develop chronic kidney disease by the time he’s forty, he won’t have any sensation left in his fingers!

Such was the environment my mom and dad received my diagnosis. Dreams for their nine-year-old only child were being shattered by every stark conversation with physicians, friends, and family.

Not that they ever let me know it.

After being formally diagnosed in the emergency department, I was admitted to Oklahoma City’s Children Hospital for a night of observation. My blood sugar was initially so high it wouldn’t register on the glucometer; thus, it became paramount to mainline insulin into my body as soon as possible to prevent diabetes ketoacidosis, a deadly consequence of untreated type 1 diabetes. So, there I was in my hospital bed, newly diagnosed with an ominous disease, and fairly emaciated, having lost fifteen pounds off my eighty-pound frame in the past three months as a consequence of elevated blood sugars. And I was definitely scared. Inside of the past twenty-four hours, my life had been warped. My greatest concern was if I’d be able to play football and baseball again. Per the conversations I overheard between the physicians and my parents, this appeared to be a pipedream now. But each time I looked up from my bed at my parents, eyes full of love and confidence, I gathered assurance I’d be okay. I knew they wouldn’t let this change my life.

The following day, with my blood sugar back into the land of the living, nurses and diabetes educators crowded in our room, preparing us for discharge. We received a thorough tutorial on insulin physiology, carb counting mechanics, and glucose monitoring basics. Then, before discharge, the time arrived for my first injection (before then, I’d received IV insulin). The nurse asked who wanted to give the first shot, her glance moving between my dad, mom, and I. I looked at my parents, saw again that faithful knowing, and asked for the syringe.

Into my upper thigh it went and into a new chapter my parents and I embarked, implicitly agreeing that we wouldn’t allow diabetes to change my life. We couldn’t let that happen.

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I went to medical school because I thought it possible to do something I never wanted to do, and somehow, remain who I was. After all, in that omnipotent trade, my record was flawless.

As a child, I took pride in having type 1 diabetes. Not because it connected me to a community of other people with the disease or because it opened opportunities to empathize with others’ struggles, but because of how much I accomplished in spite of having diabetes. I developed a “Hey, look what I can do with an arm tied behind my back!” approach to living with the disease.

Through childhood and early adulthood, I simply didn’t see myself as a person with diabetes. When I dreamed, I never had diabetes. Yes, I spoke about it constantly with anyone that saw me testing my blood sugar or dialing insulin up through my pump. And yes, it was on my mind most moments of every day. But somehow, at the deepest core of identity, I remained untouched by my diagnosis.

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For reference, while in high school, I was interviewed by a local television station in Oklahoma City. Our football team was receiving preseason predictions of playoff success, and I, as the team’s quarterback, became a story of interest because of also having type 1 diabetes. The interviewer asked me how type 1 diabetes—all the injections, the finger pricks, the carb counting—had affected me. “Diabetes was just a speedbump in my life,” I said.

At seventeen years old, diabetes was in my rearview. It was figured out. Conquered. Sure, there had been hard periods—”speed bumps” you might call them—but that was in the past.

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Fourth year of psychiatry residency, over twenty years after diagnosis, I crossed a threshold: I was finished being who I wasn’t. I couldn’t practice medicine anymore and be okay. It was impossibility; it always had been.

Curiously, this acceptance brought forth from the shadows other fallacies for evaluation, including the great diabetes delusion: diabetes won’t change my life. 

Across a season of sessions with my therapist, I parsed layer by layer through my life with the disease. In many ways, I saw that my partial denial of diabetes had served me. I had never felt like a victim. I’d always ventured into blood-sugar peril bravely—if not ignorantly—whether it be playing football and baseball, hiking to the top of 14,000-foot mountains, or running marathons, trusting that diabetes was surmountable.

But in those sessions, I started to see my blind spot too.

During college, I drank alcohol. One could say I had the quintessential college experience. Once could also say that someone with type 1 diabetes shouldn’t have the quintessential college experience.

For all college students, binge alcohol consumption will suppress the liver’s ability to produce glucose. In response, for those with a functioning pancreas, insulin secretion will decrease and glucagon will increase in response to the liver’s temporary drop in glucose release, restoring glucose levels reflexively. For those with type 1 diabetes, where insulin remains a static dose—closed-loop artificial pancreas technology wasn’t on the market yet while I was in college—no means of downregulation exists. Or upregulation for that matter, as glucagon production is also nil. (If you’re confused or would like a better understanding of diabetes physiology, here’s a 3-minute video.) Essentially, when binge drinking occurs for the person with type 1 diabetes, the floor supporting blood sugar craters. And after one particular night my junior year of college, after downing two or three too many Jack and Diet Coke’s, I fell through the floor and had a seizure.

In the aftermath of this event that demanded a fraternity brother inject me with glucagon to abort the seizure and the fire department arrive inside my bedroom for further resuscitation, I luckily walked away in good health, but absolutely ashamed of myself. Because I’d been warned.

Three years earlier, my pediatric endocrinologist, wearing his customary tie under a crisply pressed whitecoat, asked my parents to leave the examination room so that we may talk alone. It was our last visit before I left for college, and thus, one of our last visits together. I admired this man immensely. He had helped me figure out how to play football and baseball. He encouraged me to chase my dreams… but always, always, always with responsibility. Yes, he’d say, it’s possible for you to play football but only if you test your blood sugar every quarter and keep glucose tabs on the sideline. Yes, he’d say, you can play baseball as long as you keep your insulin pump in your back pocket and glucose tabs in your other pocket during longer innings. Ineffably, as he gave me these recommendations, his expression would bewilder me. There was compassion, but also concern. Like, he saw something I couldn’t.

With my parents in the hallway now, he told me, “Ryan, when you get to college, you might consider drinking like everyone else. But you’re not like everyone else. When people with diabetes drink too much, their blood sugar can dive, they can have a seizure, and they can die in their sleep. Remember, you cannot drink like everyone else drinks alcohol.”

I thanked him for the advice, as always, then quickly forgot it as I entered the college fray. If my friends were grabbing another beer, taking another shot, and I was just like them because diabetes hadn’t ever changed who I was, why wouldn’t I go shot for shot? Who would I be if I admitted a limitation I didn’t have?  

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One evening during that illuminating and final year of residency, I was talking on the phone with my mom and decided to ask her why it was so important that I go to medical school. Her rationalizations of financial security had never fully made sense. There had to be another motivation.

By this time, my mom understood I wasn’t long for the medicine occupation and that one day I’d find something else to do. She understood it was only a matter of when. So, when I asked her why, the question itself couldn’t have carried much surprise, but her reply was stunning.

“Well, Hun, if you went on to become a doctor and help people because of having type 1 diabetes,” she paused, voice trembling as I felt my own throat catch. “Then… it would have all been worth it, not just suffering.” 

Oh God, I thought. Never in a hundred tries could I have connected those dots. My parents—and myself—were still mourning my diagnosis. Twenty years later. My heart hurt.

If I became a physician and channeled my experience with diabetes into a meaningful career, then, on some level, would we all escape the reality of my diagnosis?

This line of coping, of course, dismissed my actual experience of diabetes. Becoming a physician or not, diabetes had had its horrific moments. There was suffering regardless, on mine and my parents behalf. Me becoming a physician—while never wanting to be a physician—not only failed to change what had happened, but in a crueler sense, created an inverse of the same suffering in perpetuity.

As the conversation continued late into the evening, we mourned. Adopting resolve in the face of my diagnosis and refusing to sacrifice who I was to the disease, had been advantageous in so many aspects of my life. I wouldn’t have ever wanted my parents to see me as helpless or a victim of my disease.

But now, no matter how adamantly we tried, we couldn’t avoid the the truth: I had diabetes. It was what it was. And somehow, diabetes had impacted me becoming a physician.

Whoa.

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As a kid, I was “too busy playing baseball” to attend diabetes camp; so, in my role as medical staff for the teenage boys’ cabin, I experienced camp vicariously for the first time.

At breakfast, lunch, and dinner, after the carbs were counted, insulin was given, and the conversation devolved into the age-old debate of whether cereal is best eaten soggy or crisp, I saw a group of boys share moments together. These idling conversations didn’t often steer into their experience of diabetes—sometimes they did, with one of them trying to convince another to try out a new insulin pump—mostly though, the subject stayed in its cultural lane, rolling through music, trending TikToks, and sports.

I got the sense they didn’t have to talk about diabetes, nor was there much of a need; they already knew why they were at camp, and they knew why everyone else was too. And finally, so did I.

Continuously, for the first time in my life, I was surrounded by people with type 1 diabetes. The blood sugar alarms from continuous glucose monitors and insulin pumps—sounds that have served as ambient noise to my existence for years—infused every moment of the day at camp. Spontaneously, casually, with campers and counselors alike, we’d share war stories from the trenches, revealing our wildest low blood sugar stories. I told the cabin about the time my dad found me in the front yard eating frozen taquitos and talking in tongues. My blood sugar was 27. They all laughed, then another story started, and we laughed again.

The result, by the end of camp, was watching the part of me who had wanted to keep diabetes partitioned away from who I was, waive the white flag. The war was over. The losses too steep to keep incurring more. Relationships too important to sacrifice the connection to who I was.

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When I was invited to join the camp’s medical staff by a member of the same pediatric endocrinology team that had treated me, I said yes immediately. Having type 1 diabetes myself, I wanted to help kids with type 1 diabetes. Empathy, at least on my behalf, was built into camp.

But as the meals and activities of camp accumulated into days of real sacrifice of both energy and time, I couldn’t help but wonder why everyone else was at camp. I estimated only a quarter of the staff had diabetes. Still, as I watched the staff members without diabetes work, the experience seemed rich, and like myself, none were operating begrudgingly.

Why are they here? I thought. Why is this so meaningful for them?

After the camp’s closing ceremony, the whole staff of fifty or so people, joined together for one last debrief. In my seat, I sat eating two slices of Domino’s pizza, containing roughly 78 carbohydrates per Google, and while I waited for my insulin to administer, I scanned the faces of people who I’d worked beside all week. An ache slowly built in my throat as tears welled at the edges of my eyes, so I grabbed one of the slices and started eating. But every time I’d look up, catching the face of someone—person with type 1 diabetes or not—potential tears crashed higher and higher on my bastions.

Why? I still couldn’t tell.

In ping-pong fashion, the staff began sharing highlights from camp. Behind the scenes absurdities were revealed, shoutouts were given for commendable acts, and after twenty minutes, the lump in my throat had released, and I was confident in being able to speak without instantaneous sobbing. So, I shared what I was grateful for. After immediately choking up, I was able to say what I’d hoped to say; a thank you to the staff who didn’t have diabetes for volunteering their time and energy at camp. As a person with type 1 diabetes, it meant the world.

My childhood endocrinologist wasn’t there, having retired from practice, but the way he used to look at me was. As I spoke, meeting eyes with counselors, operations crew, and medical staff, I felt them look at me the way he used to. It was that same bewildering expression, but now, it was bewildering no more.

Because I understood; I finally grasped what it meant to have diabetes.

Mercifully, another staff member spoke after me and more tears were shed, which helped temper my shame at the public display of emotion. Thirty minutes later, after saying farewell until next year, I was in my car driving away from camp when I thought again about the staff without diabetes. A mile down the road, the answer came to why they were there: because we needed them.

Then, on the level of truth, acceptance arrived: I live with the same disease that demands a camp to help its afflicted manage the emotional toll of the disease.

Something in this realization juxtaposed itself against how I’d approached diabetes for most of my life, and absolutely overwhelmed it.

While at camp, I saw—in the viewing of diabetes as something separate from myself—what I’d been missing: wholeness.

Later today, my blood sugar will change my plans. Later this week, I’ll have an argument with insurance about reimbursement for my medical supplies. Later this month, I expect those same supplies to fail in some capacity and cause my blood sugar to spike unexpectedly. These moments will suck. I will suffer. It will change my life.

But that’s alright because I don’t have to pretend diabetes doesn’t affect me. The suffering incurred won’t happen to me in a vacuum anymore. It will happen to me in a community of people who deal with the same disease; and some who don’t, but still care.

Most importantly, the suffering will never be meaningless.

Viktor Frankl, psychiatrist and Holocaust survivor, wrote, “In some ways suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.”

Part and parcel, diabetes and I are inseparable. I was never who I was because of what I accomplished in spite of it, I am who I am because of it. And if getting to volunteer at diabetes camp means I have diabetes, that’s all the meaning I ever need.

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(Photo Caption: In 2017, atop Twin Sisters summit in the Rocky Mountain National Park, locked in the perpetual chase of my blood sugar.)