I have never asked medicine to promise me a cure. I have asked it to help me stay alive long enough to come home to my children.

My medical record is not subtle. Recurrent pancreatitis led to sepsis and multi-organ failure in 2016, a Whipple procedure in 2017, and a total pancreatectomy in 2021. I now have no functioning pancreas, insulin-deficient type 3c diabetes, severely altered gastrointestinal anatomy, and an inability to nourish myself reliably by mouth. In May 2025, UT Southwestern admitted me at about 83 pounds with a body mass index below 14, extreme cachexia, intestinal failure, anemia, and electrolyte depletion. Its team restarted total parenteral nutrition (TPN) and arranged home treatment. Those facts should have triggered careful coordination. Too often, they triggered suspicion.

Bias rarely announces itself as bias. It hides in grammar. Pain becomes “drug-seeking.” Vomiting becomes “subjective.” A patient who asks questions becomes “difficult.” Once entered into an electronic record, those labels travel faster than the patient and can outweigh new tests, specialist assessments, and the patient herself.

The most frightening example involved my insulin pump. During an August 2025 Virginia Commonwealth University (VCU) admission for severe glucose instability, a history and physical described the pump as a “primary weapon” used to induce self-injury. Yet the device review reportedly showed only the known correction bolus. Endocrinology documented that the correction was appropriate and that a communication failure between my glucose monitor and pump had removed the system’s automated protection against a low. The discharge summary recorded no concern for pump manipulation. The accusation remained in my record anyway.

That is not a harmless wording dispute. I have no pancreas, unpredictable intake, and extreme insulin sensitivity. An emergency clinician who sees “weapon” before reading the endocrinology note may interpret a life-threatening low as misconduct instead of physiology.

The same record considered factitious features, malingering, and a “deception syndrome” without a clearly documented act of deliberate falsification in the available review. Meanwhile, two fecal-fat tests showed malabsorption, a clinician witnessed my vomiting, and endoscopy identified angulated, distorted anatomy. I am not claiming every clinical decision was wrong. I have had line infections, smoked, deferred tests, disagreed with treatment plans, and taken prescribed medications that create real safety concerns. Those facts deserve honest documentation and structured safeguards. They do not make organ failure imaginary. Caution and disbelief are not synonyms.

When no institution would own my care, I traveled across states seeking specialists. Then the travel itself was treated as suspicious. After my family moved to Nebraska, an interstate handoff failed, I ran out of TPN, and I was hospitalized again. At a long-awaited specialty visit, I was told I had wasted my time and should have called first. I had called repeatedly. So had my husband and my doctor.

My two sons are not a footnote. While I pursue care, they remain with relatives in Virginia. They have endured fear, separations, disrupted routines, and years of wondering whether their mother will come home. Hospitals count infections, readmissions, and discharge dates. They rarely count the child who learns not to expect Mom at home. But that is a health outcome too.

Accountability requires more than compassionate slogans. Before essential nutrition or insulin is interrupted, health systems should document the evidence, alternatives, risks, responsible next clinician, and a safe bridge plan. Stigmatizing diagnoses and behavioral alerts should be marked confirmed, provisional, disputed, or contradicted. Patients need a meaningful correction process, coordinated case conferences when specialists disagree, and fair review when programs close their doors.

Patients can improve their odds by carrying a one-page medical summary, keeping a dated evidence file, asking for denials and clinical reasoning in writing, bringing an advocate, challenging prejudicial errors with exact contrary records, and confirming the next prescriber and contingency plan before discharge. But self-advocacy cannot cure institutional abandonment. A critically ill person should not need legal training, perfect composure, and thousands of organized pages to be believed.

I completed law school because I believe facts, process, and accountability matter. I still want the most ordinary and urgent thing in the world: to become well enough to care for my children again.

Hold medicine to the standards it claims to have. Make compassion visible in the chart, integrity survive the handoff, and excellence mean that complexity triggers curiosity rather than contempt. When a patient says, “I want to live long enough to go home to my children,” believe that desire at least long enough to examine the evidence.

Monica McEathron is a patient advocate.