The Job No One Offered to Hire You to Do
When I got my treatment plan from my oncologist, I understood every line. After 34 years as a surgeon, that part felt familiar. What I didn’t understand, what no one warned me about, was the second job that arrived with the diagnosis.
There was no offer letter. No training. No pay. Yet within two weeks, I was running a small business.
I tracked appointments across several hospitals. I filed appeals after insurance denials I never expected. I checked for drug interactions. I logged symptoms at 2:00 a.m. I also tried to get doctors to talk to one another when they weren’t.
For decades, I treated patients. Even so, I thought I knew what treatment felt like from the inside. I didn’t. Not even close.
This is the hidden labor of serious illness. It starts at diagnosis and keeps going. It returns after each scan, each infusion, each new symptom. It shows up on good days, too. Patients often call it exhausting. Researchers call it “patient burden.” I call it a second job, and naming it plainly is where change begins.
What This Work Really Is
Picture an average Tuesday for someone with cancer.
First, she confirms a chemo appointment. Then she learns the approval expired. So she calls the insurance company. She waits on hold for 47 minutes. Next, she gets transferred twice. After that, she hears she needs a letter from the oncologist’s office. It won’t be ready for three days.
Meanwhile, she refills two prescriptions. She checks whether one interacts with a supplement she read about late last night, because worry kept her awake. She updates her symptom notes. She answers 17 texts from people who love her and need reassurance.
After that, she sleeps. Then she starts again on Wednesday.
These mental burdens aren’t small. Studies on health-related quality of life (HRQL) show that paperwork, calls, and constant choices can limit daily function as much as pain or nausea. That matters, because fatigue and complexity feed each other.
When the brain is already strained by inflammation, treatment side effects, and fear, it can’t take in information the same way. Yet information keeps coming. Decisions keep piling up. And the system keeps waiting.
Who Carries the Burden?
This burden doesn’t land evenly.
Long before any diagnosis, many women carry the family’s health needs. They schedule visits. They track symptoms. They remember the details. So when they get sick, they don’t step into a new role. They add illness to roles they already hold. Research on caregiving shows this, too. Women often absorb the feelings of the people around them, even while they are in treatment themselves.
Race and income can make this load heavier. Black patients face higher rates of insurance denials, which means more appeals, more forms, and more hours spent fighting for care already prescribed. Patients without steady rides must fit treatment into a world built for cars and flexible jobs. People who don’t speak English with ease may receive complex medical instructions without enough interpreter support. They end up translating both the words and the system.
In other words, the heaviest load often falls on those already carrying the most.
What Would Help
First, health systems should admit this labor exists. They should treat it as real work, because it is.
Programs that pair patients with trained care guides can cut this load. These guides can help coordinate care, handle forms, and explain insurance rules in plain language. Evidence shows these programs help. Still, many places don’t fund them well enough.
Next, oncology clinics can build better questions into routine visits. “How are you feeling?” matters, but it isn’t enough. Another question belongs beside it: “What is this costing you in time and energy?” That answer often reveals the true strain.
Caregivers also need support that doesn’t just shift the patient’s job onto them. At the same time, insurance companies that deny, delay, and demand repeated proof should be held to account. This process harms people, and the harm isn’t abstract.
People facing serious illness also deserve permission to ask for help. That isn’t weakness. It’s a wise use of limited strength.
For example, choose one family member as the main contact. Use a shared calendar for appointments and medications. Accept meals when friends offer them. Let others handle errands. These aren’t cute tips. They are ways to protect the mind for decisions that only the patient can make.
The Work That Matters
I could do my second job because I had advantages many people don’t. I had deep medical knowledge. I had strong insurance. I also had a wife of 56 years, my steady partner through every step. And I knew how to ask clear, pointed questions.
Many patients don’t have those supports. Some have none.
So we need to name this work. We need to track it, honor it, and plan for it. When we ignore it, we leave patients to carry it alone. Cancer already takes enough. The job no one offered to hire you for shouldn’t take anything else.
