When “Trust the Science” Isn’t Enough
A family’s lived reality behind the slogans—and why we’ll never stop asking questions.
“Trust the science.”
“Trust the doctors.”
People say those words so easily, as if they’re a full sentence. As if they’re enough.
But for families like mine, those words come loaded with memories we wish we didn’t carry—of being dismissed, misunderstood, and forced to become experts in a system that nearly failed our children. I don’t write this to attack medicine or science. I write it because I still believe in both—when they’re honest enough to be questioned, and humble enough to admit when they’re wrong.
Our journey is one of heartbreak and survival. It’s about medical trauma, missed diagnoses, and a trust that had to be rebuilt from the ground up. It’s also a story of love—between parents who refused to give up, and for children who deserved better care than what the system offered them.
The Diagnosis No One Wanted to Say or Hear
For over fourteen years, our son was in and out of doctor’s offices with debilitating abdominal pain, chronic sinus and lung infections, failure to thrive, and a persistent cough that haunted every room of our home. I can’t even count the number of times I was told I was “worrying too much.” That I should “let him grow out of it.” I was made to feel like I was the problem—not his symptoms.
My husband and I questioned everything. We did the research. We tracked every symptom, every test result. We knew something serious was being missed, but we were treated like overbearing parents instead of what we were—his advocates.
It wasn’t until he was a teenager that we finally got the diagnosis after a series of massive medical emergencies: cystic fibrosis. And not just CF, but also chronic pancreatitis, a brutal combination that meant he had been suffering for most of his life without appropriate treatment or support.
Then came our daughter, a month later—different child, same story. Eleven years before her CF was diagnosed. Eleven years of asking questions, of watching the same symptoms repeat and being told “it’s probably nothing.”
When "Too Risky" Was Our Only Chance
At his worst, our son couldn’t eat by mouth at all. He had no quality of life. He couldn’t attend high school, having spent nearly a third of his teenage years confined to cold, sterile hospital rooms. He was on continuous Dilaudid and fentanyljust to manage the pain—though even that barely touched it.
We were told there was “nothing else to do.” But we knew better.
We had done the research. We had sought out multiple opinions—by then, we were on our third or fourth. One came from Columbia. Another came from a compassionate grandmother we met along the way, who had watched a friend walk a similar path with her own son and daughter. It was through these conversations and connections that we learned about a highly complex, life-saving procedure: Total Pancreatectomy with Auto-Islet Cell Transplantation (TPIAT)—a surgery that would remove our son’s diseased pancreas and transplant his insulin-producing cells into his liver.
It was a long shot. But it was his only shot.
We brought the case study to his GI doctor at CHOP, Children’s Hospital of Philadelphia, desperate to give our son a chance. Her response?
“It’s too risky for someone with CF. Stop obsessing and get a hobby. Go back to work—you’re driving yourself crazy.”
I don’t know if I’ll ever forget those words that were said to me while my son laid lifeless on the exam table because he had once again passed out from his pain.
But we didn’t back down. We couldn’t. Together, my husband and I reached out directly to the University of Minnesota Masonic Children’s Hospital, one of the few centers in the country performing this surgery. They listened. They took his case.
A 20+ hour surgery later, they removed his pancreas, spleen, and gallbladder, and transplanted his own islet cells into his liver. That “too risky” surgery saved his life. Not because the system pointed us there, but because we found it ourselves. CHOP, now has a similar program at their hospital based on his success, our success.
A System That Makes You Feel Crazy
And it didn’t stop there.
Our daughter began collapsing in the shower, struggling to stay awake while standing. Her blood pressure would drop, her heart rate would spike. It took us pushing and pushing for her to finally be evaluated for POTS/Dysautonomia. It wasn’t even on their radar. Her brother was also diagnosed with the same condition, although her symptoms were much worse.
Even after that diagnosis, her struggle continued. She spent years walking around in a fog—unable to stay awake in class, falling into what I can only describe as a trance state. Eight more years passed before she was diagnosed with extreme hypersomnia, meaning she was not reaching full REM in her sleep at night, a condition that nearly cost her a college education and her confidence.
Along the way, both of our children were put on MiraLAX for chronic GI issues. We later learned this medication has never been FDA-approved for children. It was an off-label recommendation, and it caused a host of side effects that were ignored or explained away for years. This is only one of many unfortunate examples. countless medical emergencies, hospitalizations and ICU stays due to side effects of drugs and medical issues that were dismissed by care teams.
When my son’s thyroid levels began swinging wildly, I knew something was wrong. I asked—repeatedly—for antibody testing, only to be brushed off for nearly a year. When the tests were finally run, they confirmed what I had suspected all along: he had both Hashimoto’s and Graves’ disease, two serious autoimmune disorders that required immediate intervention.
Unfortunately, that wasn’t the only time my concerns were dismissed with dangerous consequences. One medication nearly killed him. In another instance, he developed life-threatening sepsis because the team ignored my repeated warnings about issues with his PICC line. There was also a terrifying episode when he began bleeding internally after his stomach acid dropped to a pH of 1. I had flagged the medication involved multiple times, only to be told it wasn’t a concern—until it was nearly too late.
These weren’t rare complications. They were moments when human error and systemic breakdowns put my child at risk. It’s why patients and their advocates must be included as active, informed participants in care—not as bystanders, but as partners. We’re not trying to interfere. We’re trying to survive.
The message we kept receiving—verbally or not—was always the same: You’re worrying too much.
And yet every time we trusted our instincts, we were right. and we hated and resented being right.
Medical PTSD Is Real
What people don’t understand is that medical trauma is real—and not just for the patients. As caregivers, we live with constant guilt:
What did we miss? What else is hiding in plain sight? Are we asking the right questions this time?
The PTSD doesn’t go away. Every time a new symptom surfaces, we brace ourselves:
Are we going to be dismissed again? Are we going to have to go to battle just to be heard?
And through it all, we have to keep face—for our children. We have to make them believe that they will be okay. That we’ve got this. That there’s a path forward. We smile through the uncertainty, choke back our fear, and steady ourselves not because we have all the answers, but because they need to believe in something—and sometimes, that something is us.
Then Came COVID
The pandemic wasn’t our first awakening—it was our confirmation. Suddenly, the entire world could see the cracks in the healthcare system that families like mine had been navigating for years.
But instead of humility, the system doubled down. When people asked valid questions about risk mitigation, chronic illness, or how to protect the vulnerable, they were met with hostility. We were told not to question. That it was dangerous to seek alternatives. That we were the problem for not falling in line.
I watched people I care about get silenced for wanting more nuanced conversations. I watched lifestyle, prevention, and chronic illness get pushed aside in favor of one-size-fits-all thinking. It felt like déjà vu.
We Are the System’s Heavy Users—But Not Its Beneficiaries
We don’t hate doctors—far from it. We rely on them. We fight alongside them. Some have changed our lives. The best among them pull up a chair, make space for our voice, and treat us as true partners in care.
And I have deep empathy for the burdens they carry. Many are trapped in a system that was not designed for human-scale healing. Hospital site protocols become more rigid and depersonalized as systems expand. Pharmacy practices are dictated by corporate policies, not individual needs. Insurance conglomerates override clinical judgment while ignoring both the provider and the patient in the room. Providers spend their days navigating endless prior authorizations and denials, often for treatments they know their patient needs.
They’re tired. And not just tired—many are hurting. and many don’t even realize how much pain they are in.
Studies show that physicians have one of the highest suicide rates of any profession, with more than 300 doctors dying by suicide each year in the U.S. alone—that’s about one a day. Rates of depression and burnout are staggering. Nearly half of all physicians report symptoms of burnout, and the number is even higher among primary care providers, pediatricians, and specialists serving medically complex populations.
They are overworked, burdened with school loans, and often unprepared for the emotional weight of practicing within a system that emphasizes volume over healing. And when they encounter something outside their training—or their pay grade—they may feel ashamed to admit it. The system doesn't reward humility. It punishes uncertainty.
So no—we’re not anti-science. We’re students of it. We’ve had to become our own case managers, clinical researchers, and medical translators just to keep our kids alive—not because our doctors didn’t care, but because they’re often trying to do the right thing in a system that makes it nearly impossible.
We are ravenous consumers of healthcare. Not by choice. By necessity. And no—no one is profiting off families like ours. Not the insurance companies. Not the hospital administrators. Not the exhausted clinicians who lie awake at night thinking about the patients they couldn’t help.
All we ask is to be treated as partners in care. Not problems. Not obstacles. Our lived experience is not a challenge to clinical authority—it’s a complement to it. Together, we can build something better. But only if everyone in the room is allowed to speak.
What I Want You to Know
I’m grateful for the miracles. For Trikafta and Alyftrek, two groundbreaking drugs that may give my children decades they were never promised. But I had to find those trials myself. Nothing was handed to us.
I’m grateful for the doctors who treated us like partners, not problems.
I’m grateful for the caregivers and patients who taught me how to fight smarter—and kinder.
And I’m endlessly grateful for my husband, who never left my side. He researched with me, asked the hard questions with me, advocated alongside me—every step of the way. None of this would have been survivable without him.
It doesn’t just take a village—it takes a nation. A world. A system that actually listens.
If You’re a Doctor, Researcher, or Healthcare Leader
Please: stop being afraid of families who ask questions. Please, speak our language. We are not your enemy. The pain is ours, not yours. The risk is ours. The decisions, the bills, the fallout—they land in our homes, not your charts.
We don’t want perfection. We want partnership.
If You’re a Patient, Parent or Caregiver in This Fight
You are not crazy. You are not alone. You are not “too much.” Keep asking. Keep researching. Keep showing up. Your voice matters—because you live this, every day. And sometimes, the right question is the treatment.
And remember this: your medical team works for you. You can fire them. You can hire someone else. You are not obligated to stay with a provider who dismisses your concerns or treats you like a checklist instead of a human being.
That said, we must also recognize: not every family has that privilege. Many are constrained by insurance networks, financial barriers, geography, and systemic inequities. If you do have the ability to choose—take full advantage of it. Advocate not just for yourself or your child, but for those who don’t have the same voice or access.
Medicine should never be about convenience. Healing often requires discomfort: asking hard questions, traveling farther, breaking with protocol, or stepping outside the system entirely. That isn’t rebellion—it’s responsibility.
And while you push for better, don’t forget what you can do now.
Be proactive. Take charge of your own health. Learn how your body works. Make small changes at home—whether it's in your nutrition, movement, sleep, mindset, or environment. Preventive care doesn't only happen in clinics—it happens in kitchens, backyards, and everyday habits.
If you're able, advocate for someone else. A parent. A partner. A friend. Sometimes, the most powerful thing you can do is show up for someone too overwhelmed or unwell to speak for themselves.
Also understand this: many of the doctors and nurses you encounter are caught in the same system. They’re overburdened, exhausted, pressured by hospital policies and insurance constraints, and rarely given the space to practice medicine the way they envisioned. That doesn’t excuse harm—but it reminds us why grace and persistence are both essential.
You are not powerless.
You are not a nuisance.
You are part of the care team—and sometimes, the most important member.
So speak. Act. Ask. Change providers. Change direction. Change the script.
Because no one will fight harder for you and your loved ones than you.Final Thought
Real science doesn’t fear scrutiny.
Real medicine invites partnership.
Real care listens.
We’re not here to destroy trust.
We’re here to rebuild it—better, braver, and more honest.