Why patients write: stress relief, self-care, and sharing experiences

To compliment and complement the KevinMD article “Why physicians need to write,” by Dr. Louise Aronson, I’ll share why patients, at least this patient, write. I wrote What Patients Want: Anecdotes and Advice because I had been “adrift in a draft, if you get my drift,” in doctors’ offices, and I thought I could share the perspective of the patient in the white paper sack, with health care professionals in white lab coats. I started writing for many of the same reasons that many people write:

To relieve stress, it’s cathartic. It provides some balance between good and bad, happy and sad, regarding a diagnosis, an exam, a doctor’s visit, etc. For example: The room was cold, but the exam was easy. It’s like a seesaw; you often see things a little more clearly from a distance. It gives time and space for reflection, and you can be reflective rather than reactive.

Writing can be a form of self-care while also sharing with others, so people can nod in agreement, or nod off, or anything in between. It redirects pain. Since your brain isn’t focused on pain but on writing, it eases tension, so I can pay attention to my thought processes.

It gives you a chance to step into the doctor’s shoes once you step away from the encounter. You don’t have a knee-jerk reaction, even if your knee is still jerking (due to an illness, injury, etc.). You don’t have to replay the encounter in your head over and over like a broken record. I realize there are people who would say, “What’s a record?” (Ouch). Some days, I miss the days when “technology” was a record player. For the record.

Sometimes the time for contemplation inherent in writing gives you a chance to add something to your medical record. Maybe as you write, you remember a previously forgotten medicine allergy, for example. After you’ve written something about a medical visit, a week later, what made you so incensed won’t seem so intense, and you might feel less tense, and the doctor’s perspective might make more sense.

As a caregiver, I wrote too. My Mother Has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale encapsulates many aspects of my caregiving journey. It includes some funny anecdotes, like when my mom wanted to tell someone that she had pounded the pavement, looking for a job (accounting) in NY after college, but what she said was, “I walked the streets of NY if you know what I mean.” I was mortified at first, both by her diagnosis, my newfound responsibilities, and her wording of things, but later, I used my words to highlight some humor in the situation. (My mom might have been a sweet talker, but she wasn’t a street walker.)

The cliché is that time heals all wounds. Not always. Rhyme doesn’t heal all wounds either, but maybe it helps you release some frustration, especially if you “fell” and don’t feel “well.” Rhyming words, anyone? Sometimes my stress about a medical issue (or otherwise) is relieved rather than relived by writing and/or going for a walk, rather than going to the fridge. I didn’t want to eat out of stress or eat my heart out. I’d rather, if necessary, eat my words. That’s food for thought. It’s revealing that you can be feeling bad, yet still healing.

Sometimes I set out to deliberately write, and other times, in the middle of the night, I get an idea and jot it down, on the pad behind my head, behind our bed. At first, when I’d get into these contorted positions, my husband would ask if I was hurting. Now he asks if I’m inspired. Apparently, I like to write in the middle of the night. Scribbling is better than quibbling.

I don’t like to be confrontational, so writing lets me write down my concerns rather than confronting a doctor directly. However, sometimes the latter is warranted. Writing isn’t a replacement for conversation; it depends on the circumstances.

Writing lets you be mindful and mindless, all at the same time. Let your mind wander and ponder.

I once wrote an article, and then thought that I might have been too critical regarding the medical profession. I was hurting and in a bad mood when I wrote it. I almost asked for my article not to be considered for publication, but I didn’t write it to be redacted or retracted. I wrote it to be read. And it was. The only name I used was mine, and I stand by my words. Contrary to what I initially thought, people whom I know who read it didn’t find it overly or overtly harsh. Sometimes as writers, we can be our own worst critics.

Writing lets you take a deep breath and exhale. As a caregiver and/or patient, you often feel you don’t have time to breathe. Writing lets you have some breathing room, away from the exam room. You can think of your words as lyrics to a song, for one person or a throng. If you’re tense, you’ll redirect that emotion to keeping the tense consistent in your article. (My English teachers would be proud.)

I try to write with humor and heart since you need both in life, and particularly when dealing with health issues. Other people often recognize themselves in your words. It makes everyone feel less alone. And that’s priceless. Whether you get paid to write or not, it still pays to write. Write on!

R. Lynn Barnett is the author of What Patients Want: Anecdotes and Advice and My Mother has Alzheimer’s and My Dog Has Tapeworms:  A Caregiver’s Tale. She can be reached on Twitter @rlynnbarnett1.

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