I entered medical school armed with a large collection of my favourite fiction, a boxset of Friends, and excitement for this new phase of my life. Although getting lost in a book had always previously been one of my favourite things to do in my spare time, I found that with the increasing number of hours my head was in a textbook, I slowly started to lose interest in reading for fun anymore.
This year I reignited my interest, and with it I found that the act of reading personal stories—someone’s narrative—could offer doctors more than just the pleasure of a good book. I recently read Inside the O’Briens, a story where Joe, a family man, is diagnosed with Huntington’s disease. The book portrays the difficulties Joe experiences, going from the dependable father and rock of the family, to someone he doesn’t recognise anymore. That sense of loss of who you once were, and the inability to have control over the person you are, is captured powerfully and movingly, and it opened my eyes to how patients with a neurodegenerative condition, such as Huntington’s, can experience its effects.
Some time after reading the book, I encountered a patient with Parkinson’s disease. Seeing how this patient couldn’t control their tremors or their speech, the memories of Joe’s frustration came back to me and the empathy I felt was magnified.
When learning about Huntington’s I had memorised the “dancing propensities” of the characteristic chorea, the fluctuating emotions, and the genetically imprisoned fate of patients. However, after reading this book I saw how it affected Joe as a person: his view of himself, his family coming to terms with it, the reactions of people who knew about his diagnosis and those who didn’t.
As medical students, we often need a first person insight to even partially understand how much a condition can affect an individual. This is most commonly (and preferably) acquired by way of seeing a patient and speaking with them. But with the vast number of diseases present, we should also find other means to acquire this insight; especially in neurological conditions where the patient may not be able to tell us themselves. It was in this way that I came across Still Alice, a book that is unflinching in how it depicts the debilitating way that loss of memory can impact someone’s life and their functions.
However, whereas Alice was aware of her diagnosis before being greatly affected by it, it had crept up on Maud, the main character in Elizabeth is Missing, as it so commonly does for many patients. Maud’s confusion, her attempts to try to remember, her forgetfulness during everyday tasks, and her disposition were all laid out for the reader to experience.
Before reading this book I had seen many patients with Alzheimer’s in geriatric wards—I’d looked at their blood results and x-rays when they came in with pneumonia, worsening heart failure, or a stroke, and these physical problems seemed the biggest priority. Now, while I agree that these problems are more immediate, I can’t see that they are more important. I commend our NHS and its attempt to see the person behind the disease with the This Is Me tool. Since reading this book, I have actively looked for this document in the notes and tried to use it when speaking to the patient, which has led to some astonishingly positive results.
As a result of my reading I have asked better questions, become more empathetic, and these diseases have become more than just a list of signs and symptoms to remember. But, as much as I have enjoyed these medical fictional reads, I have also enjoyed my other fiction too. So next time you want to relax, pick up a book. You may be surprised by what you learn from it.
The renowned neurologist Oliver Sacks famously said “In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
Reading has the ability to do just this. Read into the mechanics of disease, yes, but do not forget to explore the person behind the syndromic shadow.
Pratheeshaa Varuni Nageswaran is a fourth year medical student at the Peninsula College of Medicine and Dentistry. She is interested in a wide array of specialties, as well as having a special enthusiasm for medical education.
Competing Interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.