Beyond the Textbooks – What Patients Teach Us About Illness

Recently, I had a conversation with someone in medicine who also teaches. They had recently undergone surgery and mentioned that the experience changed the way they now approach teaching. They told me that after recovering, they went back to their lecture slides and realized they had focused almost entirely on the physiology of the condition—but very little on the aftercare. To paraphrase them: “Same-day surgery is the easy part. You go in, you go home. It’s the days after that are hard. We don’t talk enough about that.”

That conversation made me reflect on my own medical education. So much of my didactic years—and the endless hours of studying for Step 1—focused on facts, values, and definitions. For example, I can recite to you the diagnostic numbers for diabetes mellitus type II: fasting glucose levels, A1c percentages, glucose concentrations in the urine. I can list the hallmark symptoms: numbness and tingling in the fingers and toes, increased urination, greater risk of infections. I know that diabetes stems from the body’s inability to properly process, store, or retrieve glucose, and I can explain in detail the downstream complications that result.

But what I can’t tell you, at least not from my classroom years, is what it actually feels like for a patient to live with diabetes. I wasn’t taught how painful it is to prick your finger daily—or how overwhelming it can be to inject yourself multiple times a day with insulin. I know, in theory, that these barriers contribute to non-compliance, but I don’t yet understand what that truly means for the patient sitting across from me.

I can explain the costs of medications, the logistics of appointments, and the inconvenience of refilling prescriptions. But I still wonder how much I’ll learn in rotations about the emotional and practical toll of illness. Will I know how to prepare patients for the frustration of reorganizing their life around daily medications? Will I know how to support someone who feels demoralized when their disease collides with their identity? (For instance: how an older patient with a broken leg might fear mortality, while a young athlete with the same injury might panic about losing their livelihood.)

I don’t yet know what rotations will bring, but I hope I carry this awareness with me: medicine is not just about memorizing physiology and pathology. It’s about helping patients navigate the long, difficult days after the diagnosis, after the procedure, after the prescription.

So I want to ask you:

  • Have you ever received medical treatment for a condition?
  • What surprised you most about living with it?
  • Did you realize how much brain space it takes to take medications on schedule?
  • Did you have to reschedule life around therapy appointments?
  • Were you confident in the instructions you were given, or did you wish someone had walked with you more closely through the process?

Share your thoughts below. Maybe together, we can start a short series on the lived experience of illness—because those lessons deserve just as much space in medicine as the science itself.


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