For families navigating the complexities of chronic illness, Maggie’s story offers a powerful reflection. Before her Crohn’s diagnosis at sixteen, Maggie, a vibrant “theater kid,” found solace and strength in the Hamilton lyric: “I am the one thing in life I can control.” This deeply personal belief in her independence was profoundly challenged when her own body became unpredictable. What happens when the very foundation of self-reliance is shaken by an illness that defies control? At our Spring 2025 Live Online Community Conference, Maggie bravely shared her journey, offering insights into adapting to a new normal, redefining strength, and discovering that true resilience often lies not in control itself, but in the courageous choice of how to respond when life takes an unexpected turn. Her story is a testament to the power and resiliency of the human spirit within our shared chronic illness community.
Be inspired by Maggie’s #IgniteTalk 🔥
Hi everyone,
My name is Maggie, and I’m one of the advocacy co-leads of the Patient Advisory Council. Before I tell you my story, I have a little confession: I’m a secret theater kid. I grew up doing plays, taking singing and dancing lessons, and falling in love with musicals. My all-time favorite? Hamilton. And there’s one lyric from the song “Wait For It” that always stuck with me: “I am the one thing in life I can control.”
That lyric used to make me feel powerful. I’ve always been very independent. The kind of person who never wanted to rely on anyone else, who thought if I just worked hard enough and stayed disciplined, I could handle anything life threw at me. But then I got sick.
I was diagnosed with Crohn’s disease in January 2023—three months after I turned sixteen. But the signs were there long before. I’d sprint off the volleyball court mid-game to go to the bathroom and wake up exhausted no matter how much sleep I got the night before. I ignored the pain, the fatigue, and the fear—because I believed I could manage it on my own. That’s what I’d always done.
It wasn’t until I couldn’t go to school anymore, until my bowel movements were just blood, that I finally realized this was something I couldn’t push through alone. On January 17, 2023, I was admitted to UCSF Benioff Children’s Hospital. After a colonoscopy, endoscopy, multiple MRIs, and transfusions, I was officially diagnosed with Crohn’s disease.
Like many patients, I was thrown into the world of IBD faster than I could process. I was terrified. Suddenly, I was surrounded by a team of people—nurses, nutritionists, social workers, and my GI—telling me how much my life was going to change. But change how? I didn’t even know how to accept help, let alone rely on it. I’d never needed anyone like this before.
Like many patients, I was thrown into the world of IBD faster than I could process. I was terrified. Suddenly, I was surrounded by a team of people—nurses, nutritionists, social workers, and my GI—telling me how much my life was going to change. But change how? I didn’t even know how to accept help, let alone rely on it. I’d never needed anyone like this before.
My GI had promised me I’d be back at school by the following Monday. Spoiler alert: I wasn’t.
For six months, I was on home hospital instruction. It felt like 2020 all over again—but this time, I was the only person social distancing. I was scared to re-enter my life—scared that I would embarrass myself in public, that my symptoms would take over, that this disease would be what defines me.
And honestly, for a while, it did.
I spiraled—physically, mentally. Each week brought more pain and fewer answers. I dreaded my doctor’s appointments. I’d cry at every IV and had panic attacks just thinking about the hospital. My mom would sit next to me, one of her hands holding mine, and the other holding up a phone playing Keeping up with the Kardashians to distract me. Over time, I noticed that I began humming songs to myself in order to keep from crying. I realized that I created a bunch of small little coping mechanisms that I repeated at every appointment. I clung to anything that gave me a sense of stability—because I felt like I had none.
Hamilton quickly became a security blanket for me. Night after night, I watched Hamilton to escape from the reality of my life. Over and over again. And every night, I’d hear that lyric:
“I am the one thing in life I can control.”
At first, it made me furious. How could I control anything when my own body was constantly turning against me?
But eventually, something shifted.
I realized that I couldn’t control my body. I couldn’t control how my treatments worked or how many times I had to be poked or prodded in the hospital. But I could control how I responded. I could control my mindset. I could decide not to let this disease strip away who I was.
And that was the start of something.
I started standing up for myself in appointments. I stopped letting doctors talk to me like I was just a disease. I sought out a new GI and for the first time, I felt truly seen. She treated me like a person, not just a patient.
Since then, it hasn’t been easy. I’ve rejected two biologics, had countless tests and procedures, and gone through more physical and emotional pain than I thought I could handle. But each time, I remind myself: My body might be out of my control—but my response isn’t. My independence didn’t disappear; it just looks different now. I learned that accepting help doesn’t make you weak—it’s a different kind of strength.
Since then, it hasn’t been easy. I’ve rejected two biologics, had countless tests and procedures, and gone through more physical and emotional pain than I thought I could handle. But each time, I remind myself: My body might be out of my control—but my response isn’t. My independence didn’t disappear; it just looks different now. I learned that accepting help doesn’t make you weak—it’s a different kind of strength.
And here’s what I want everyone here to know—whether you’re a patient, a parent, a provider, or someone who just cares deeply about pediatric IBD:
You can’t always control what happens to you. But you can control how you move through it. And you don’t have to do that alone. The Patient Advisory Council, Parent and Family Advisory Council, support groups, therapists, conferences like this—they exist so that we can lift each other up. So we don’t have to pretend we’re okay when we’re not. So we can learn how to lean on each other without losing ourselves.
That lyric still plays in my head every day.
“I am the one thing in life I can control.”
And now, I finally believe it. Not because I’m perfectly healed, but because I now learned how to hold on to myself—even when everything else feels out of control.
Thank you.
Want more 🔥 ignite in your life? Find our fabulous Ignite Talks from patients, parents & clinicians 💚💙
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
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Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
