What Textbooks Don’t Teach You

(or, the perils of knowing only by the book)

Every freshman biology book explains the difference between dominant and recessive traits. We learn that some traits, like widow’s peak, are considered dominant—only one copy of that allele is needed for a person to exhibit that trait. Some traits are recessive, meaning that two copies of that allele are needed in the individual who exhibits that trait. For standardized testing like the MCAT, we are taught that Huntington’s disease is an autosomal dominant disorder of a protein on chromosome 4, meaning that an affected parent has a 50% chance of transmitting the disease to his or her offspring. And then it’s on to the next fact to memorize.

From a quick google search, you can discover that Huntington’s disease announces itself at around 30-40 years of age in most cases. At the molecular level, the disease is caused by excess “trinucleotide repeats” that are toxic to the brain. Within a few years, patients have characteristic motor, cognitive, and psychiatric issues, including the famous “chorea” symptom, involuntary movements that are unable to be controlled. Patients often experience cognitive decline and are unable to make sound decisions, and some patients experience psychiatric symptoms such as depression and OCD.

Textbooks don’t teach you about the devastation that patients with Huntington’s disease experience or the gnawing fear that beloved children would develop the disorder years later. Textbooks do not tell you about the emotional trials of watching your father or mother succumb to the disease, knowing that the probability that you will follow the same devastating course is the same as a coin flip. Textbooks often deliver information about diseases and symptoms in a cold, calculating manner, and we often don’t realize the implications of the diseases we are learning about. There is only so much a textbook can teach you about the human condition, and I think that the only way to really learn about a disease is to work with real people who live with it. Knowing by the book is simply not enough.

My first hospice patient was a woman name Kate (changed due to privacy reasons) who suffered from Huntington’s disease. She had been unable to stand for several years, spending all her time in bed watching television at an intensely loud volume. She had no items on her table, save for an old bottle of gingerbread hand lotion. She was in constant pain, counting down the hours until she would get her next dose of pain medication. She never knew what day it was and often asked me if Christmas was around the corner. During my visits, I sat on a lawn chair that would otherwise collect dust in her closet. I asked her to tell me about her life, and I listened intently as she mumbled stories from her life as a NICU nurse. When she could remember, she would tell me how much she loved her job. She would spend hours after work sewing clothes for the babies in the unit, and she took great pride in the work she was doing. She knew that I wanted to be a doctor someday, and after every visit, she reminded me that working at a hospital was hard work. “Treat your nurses nicely,” she would say weakly.

Her brother was a classically trained singer and war veteran who was devastated by the disease. When the disease began its terrible course, she knew that she could be next. I could hardly imagine her distress when she was later cursed with the disease. She slowly lost her decision-making abilities and eventually left the hospital because she was unable to do what she loved. I knew this was especially devastating for her because she always talked about the babies she worked with in the NICU as if they were her own.

Kate told me during one of my visits that she was expecting a call from her son. She raised him while working the night shift at the hospital, and she beamed with pride every time I asked about him. He had run away in his early twenties with his girlfriend, breaking off all contact with his family. I could sense that she was intensely worried about him, knowing that he too could fall victim to the disease. Her son never called, and I stepped in to fill that role for her instead, asking for life advice and trying to remind her of her favorite things.

I can think of countless other examples of textbook knowledge falling short. As a psychiatry intern this summer at Boston Children’s, I spent hours reading about the various functions and side effects of antipsychotic drugs. And because of the systemic nature of these drugs, side effects were rampant. Risperidone caused intense weight gain, and this fact didn’t strike me as important until I met a patient who was bullied after having gained 30 pounds over the course of a month. Some drugs require constant blood draws to check for neutropenia, and it was only until I met a patient who had to miss school every week to get her blood drawn that I realized that this seriously affected her life. Textbooks simply don’t tell you about teach you about how diseases and treatments can adversely impact someone’s ability to lead a normal life.

As we continue to study medicine, memorizing symptoms, side effects, and diseases, we must remember that every term we learn impacts a patient in a profound way. And it is so remarkably easy to lose sight of this—as we gather more knowledge, we forget that we are learning about things that derail lives and ruin relationships. This is why the clinic is so important, why seeing and interacting with people is so vital to understanding medicine. After all, medicine is fundamentally a science about people.

Thank you for reading, and feel free to let me know what you think! (Email addresses are kept confidential)