You know me as GLA's blogger and as the author of One Tick Stopped the Clock. But how did I come to write about my journey with Lyme disease, babesiosis, ehrlichiosis, possible bartonella, and chronic active Epstein-Barr virus? Like achieving remission, the journey to becoming a health writer was not linear, and required starting small in order to reach larger goals. Throughout my decades-long battle with chronic illness, however, writing has played a significant role in my healing.
I’ve always wanted to be a writer. In third grade, I squirreled away in my room writing stories and poems. In fourth grade, I was excited to be given the superlative “Best Writer,” which I wanted so much more than “Best Line Leader” or “Neatest Desk.” I ended up studying creative writing in college, and then in graduate school. So even though I couldn’t have predicted what I’d end up writing about, I did know that my career would involve writing (and my other passion, teaching).
Even if you don’t consider yourself a writer (and I’d argue that everyone is), or writing has just never really been your thing, taking up a small writing practice can be beneficial to your health. As outlined in James Pennebaker’s book Opening Up and in other works like Dr. Annie Brewster’s The Healing Power of Storytelling and Louise DeSalvo’s Writing as a Way of Healing, there is scientific evidence that the act of writing—of getting one’s story out onto paper or screen—is healing. When we write, we come to terms, meaning we literally find the terms or words to tell our own stories. We process through our experiences in ways that can’t happen when thoughts are just swirling in our heads. We gain new perspective. And, perhaps most importantly, we take control over our narratives. For Lyme and other chronic illness patients who have lost so much agency, writing is a way to reclaim it.
Of course, writing one’s illness narrative can be a daunting task. I spent three years in graduate school working on my memoir, and it took almost a decade until it was ready for publication. I wasn’t able to start writing the book until I was in remission, living independently in Boston and leading a life that was not solely focused on illness. When I was acutely ill, I couldn’t write about illness because I was still very much living it. I was too emotionally close to the topic.
But writing still played a role in my healing.
Lying in bed all day unable to work or exercise, I needed a reminder that I had once been a vibrant person. I needed to feel that a flicker of vivacity still lived inside me. I started sending emails to friends sharing funny anecdotes from our time studying abroad in college. The stories gave us all a good laugh, and helped connect me to people who I loved but who were living such different lives than I was at the time. Ultimately, the little emails became fuller stories and longer chapters that eventually turned into my first memoir, Et Voilà: One Traveler’s Journey from Foreigner to Francophile.
That evolution took years. When I first sent the emails, I could only type about a paragraph at a time before joint aches and brain fog took over. Some days, my fingers hurt too much to type or hold a pen. But other days were better, and I’d again direct my energy toward emailing friends, which I considered critical social medicine.
To help pass the time, engage me in a favorite hobby, and flex my scrambled brain, one friend started playing writing games with me. He’d send me one silly sentence, and I’d send back another, and so on, until together we’d written a funny story. He’d send me a name of someone we went to college with, and I had to think of another classmate whose name started with the same letter. He’d asked me to describe my day using only two-syllable words.
Writing, became fun, and healing, even though I wasn’t yet using it as a tool to process through my healing journey.
Submit Your Patient Story to GLA:
If you’re in a stage of illness where writing your story feels too overwhelming, you might ask a friend to play some of the writing games that I used. Another idea links to mindfulness: pausing to write down what you see, hear, smell, taste, and feel in any given moment. Try it again an hour or a day later. Or, before bed each night, write down three good things about the day or three things you’re grateful for.
If you’re feeling ready to write about Lyme, here are some prompts to get you started:
After writing your piece, I encourage you to write what Louise DeSalvo refers to as a process journal, in which you reflect on what it was like to write about your experience. What did the process bring up for you? How did it make you feel? Process journals help us link feelings with story and give us newfound perspective.
If inspired to do so, please submit up to two double-spaced pages of writing to marketing@gla.org to be shared with the GLA community. To learn more info about submitting your story, visit here.
And, if you’re interested in learning more about healing and writing and doing more writing of your own in a supportive community, consider joining me for my next Writing to Heal class: https://www.jennifercrystal.com/teaching-coaching.
***