Somewhere in my medical chart, a doctor has written that I have “limited healthcare literacy.”

If I’d known at that time that this was what he thought of me, I might have put up a fight over the label. 

The US Department of Health and Human Services defines someone’s healthcare literacy as the “degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”

Nearly seven hours before encountering this doctor, I’d walked into the emergency room complaining of “lower right quadrant pain,” to which yet another doctor had responded, “oh, your belly hurts?”

He used the word “belly.”

I used the words “lower right quadrant.”

That was just after 8 a.m., at my first emergency room of the day. I’d visit three before the day was over.

I'd woken up at 5 a.m. in searing pain. By 8:41 a.m., a medical chart notes I was “doubled over” from the pain. 

For a person with limited healthcare literacy, I was keeping pretty good track of things.

I knew I'd woken up at 5 a.m. I knew which quadrant hurt. I knew exactly which over-the-counter medications I’d taken and had the wherewithal to bring along a small plastic baggie filled with my prescriptions so the nurse could enter them into my chart.

I knew something was wrong.

What I didn’t know, what I couldn’t know, was that inside my body an ovary was being strangled.

At 11:02 a.m., radiology flagged what the CT scan showed: ovarian torsion. An ovary, enlarged and twisted, was cutting off its own blood supply. My husband recalls a doctor explaining to him what this meant: an organ was “dying” inside my body. 

At 11:11 a.m. (roughly three hours since my arrival in the ER, but who’s counting), I received my first shot of narcotic pain medication for ischemic pain — the kind of pain that’s caused by a dying organ being strangled of blood supply. 

There’s a note in my chart from that first ER: “Critical care was necessary because of an illness or injury that acutely impaired one or more vital organ systems such that there was a high probability of imminent or life-threatening deterioration in the patient’s condition.”

At 2:11 p.m., I rode in my first-ever ambulance to a second emergency department.

At 3:11 p.m. — nearly seven hours after I'd walked into my first ER using words like “lower right quadrant” — a doctor at that second ED made his notation about my limited healthcare literacy.

I had, at that point, successfully navigated two hospitals in one day while managing the kind of pain caused by a dying organ. I had my prescriptions in a baggie. I knew which quadrant hurt.

But sure.

At 5:58 p.m., I took my second-ever ambulance ride to a third emergency department. 

Surgery came after 9 p.m. 

The ovary did not survive.

Here's the thing about reading your own chart two years later: you start to understand what the doctors saw.
They saw a woman “doubled over” in pain.
They treated the pain… eventually. They diagnosed the emergency… eventually. Somewhere in there, one of them looked at me on one of the worst days of my life and saw a patient with limited healthcare literacy.
Here's what I'd like him to know, two years out: I can read a chart just fine.
And my “belly” was never the problem.