Medical Illiteracy

Medically illiterate, or having low health literacy, refers to a limited ability to find, interpret, and use health information to make informed decisions. It affects a person’s ability to understand medical terms, follow medication instructions, and navigate the healthcare system, leading to poorer health outcomes and higher costs

Looking back, I realize now that the lack of health literacy can be related to limited education, frailty, cognitive impairment, or belonging to a certain demographic. These factors can be a serious impediment for anyone who may not understand their health issue. This is particularly important regarding potential organ donors, whose lack of health literacy can result in uninformed decision-making when deciding whether or not to donate. Simply put, health literacy can be defined as the “degree to which individuals have a capacity to obtain, process, understand, and communicate about basic health-related information needed to make informed health decisions.”
~ Second Chance: My experience with kidney failure by Calvin C. Whitfield

Most of us enter a doctor’s office believing we’re prepared. We’ve spent years learning how to navigate life by paying bills, managing households, working, and solving problems that come at us from every direction. On most days, we’ll think we’ve earned our competence.

Surely, we can handle a fifteen-minute doctor’s appointment. Then the doctor starts talking.

Creatinine levels. GFR. Phosphorus binders. Immunosuppressants. Living donors.
All these uncommon words in daily life make the room seem smaller.

It isn’t about intelligence. Medical illiteracy doesn’t discriminate. It isn’t a sign of a limited education or a lack of effort. Attorneys, teachers, engineers, and business owners walk into appointments every day and leave with a handful of pamphlets and an overall sense of confusion. The vocabulary of medicine is its own language, and most of us were never taught to speak it.

I know this firsthand. When my kidney disease progressed and the conversations shifted from general wellness and diet to kidney dialysis and transplant timelines, I nodded along, hoping the pieces would connect later. Sometimes they did, but more often they didn’t. I would leave appointments with more questions than answers and only a blurry understanding of what had been decided about my next steps.

In waiting rooms, I felt like the only person who didn’t understand what was happening. Other patients flipped through their lab results with calm familiarity while I stared at mine, trying to make sense of numbers that refused to settle into meaning. The isolation settled in my chest long before I had words for it. Then I learned something that shifted the shame I’d been carrying: the World Health Organization (WHO) notes that even people who read well and are comfortable with numbers can face health literacy challenges when they are scared, confused, or under stress.* Realizing I wasn’t alone didn’t fix everything, but it softened something in me. It reframed my confusion from a personal failure to a common human experience, especially in moments of stress, illness, or fear. In those moments, even capable, sharp people lose their footing.

There is a gap between knowing and understanding. A doctor can explain a procedure clearly and still have a patient leave, uncertain of what happens next. Medical concepts are layered. One term leads to another. Context matters. And when you are sitting in an exam room, worried and emotionally stretched, absorbing complex clinical information becomes even more challenging.

That silence can be costly. A missed instruction. A misunderstood dosage. A symptom was ignored because no one explained what to watch for. The consequences aren’t dramatic, but they accumulate. For me, the turning point came after an appointment where I nodded along, pretending I understood a medication change I didn’t. I went home, reread my notes, and realized I couldn’t explain the plan well enough to follow it safely. That moment, standing in my kitchen, holding a printout that might as well have been written in another language, the paper soft at the edges from being handled too many times and damp from my palms, was the first time I admitted that staying silent wasn’t protecting me.

It was putting me at risk.

That realization didn’t make the conversations easier, but it made me braver. And it taught me something important: medical clarity isn’t handed to you. Ask for it.

The first time I tried, it felt awkward. I remember sitting in an exam room, heart beating a little harder, and saying, “I… I’m sorry, I don’t quite understand what that means. Could you explain it another way?” The doctor paused, nodded, and started over with simpler language. That moment showed me that asking for clarity was not a burden. It was a tool. Once I used it, I began to see other ways I could support myself in these conversations.

From that experience, I learned a few things that help.

• I started by asking for plain language. The first time I tried it, the words felt clumsy in my mouth, but the relief that followed was immediate. It is reasonable to ask, “Can you explain that without the medical terms?” Doctors welcome it, even if I still wonder why they do not explain it simply to begin with.
• I also learned the value of bringing someone with me. A second set of ears catches what one mind under stress might miss. My parents, who are part of my care team, were there during the transplant appointments, and hearing them ask questions I did not think to ask made me realize how much support changes the room.
• Writing things down became another tool. At first, I scribbled notes, trying to keep up. Over time, I learned to pause the conversation and ask for written instructions instead. Memory under pressure is unreliable, and having something concrete to reference later kept me from spiraling into confusion.
• Trusted resources helped fill the gaps between appointments. Websites like the National Kidney Foundation, the Mayo Clinic, and the Cleveland Clinic translated medical language into something I could understand. They became a bridge between what I heard in the exam room and what I needed to do at home.
• And compassion mattered more than I expected. When someone asked, “Did they explain what that means?” or “Would it help to talk through what the doctor said?” it opened space for honesty. I learned to offer that same space to others, knowing how heavy the medical journey can feel.

And if you are the one sitting in that exam room, nodding along while the words blur together, you are not alone. You deserve clarity, not confusion. You deserve care that meets you where you are. And the person across from you would certainly rather slow down and be understood than leave you guessing.

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Medical literacy is not a test of intelligence. It is a skill that most of us were simply never given the chance to develop. What matters now is the ability to step forward anyway. Each appointment becomes an opportunity to speak up, to ask for clarity, to practice advocating for your own body. These are learned actions, not innate traits, and they grow stronger each time you use them. The more we talk about it, the easier it becomes for people to ask the questions they have been carrying.

No one should have to figure this out on their own.

* Health literacy (2025) ~ World Health Organization (WHO)
www.who.int/news-room/fact-sheets/detail/health-literacy

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