Tips for Writing Through—or About—Your Own Lyme Journey

Discover how writing can be a healing tool for your Lyme journey. Explore tips and prompts to begin your own narrative and connect with your experiences.

Recently, I published a blog post about my experience writing my illness narrative. I discuss how I got started, how writing helped me process my experience, and how I eventually came to put my memoir One Tick Stopped the Clock out into the world. You may be wondering how you can use writing as a healing tool, but perhaps you aren’t sure where to start. Maybe you feel overwhelmed or too tired to write something long and involved, or you’re worried about sharing you work with others. Here are some tips and guidelines to help assuage your concerns and get you started on your own writing journey!

Why Write?

Everyone has a story to tell. Writing helps us understand ourselves, each other, and the world around us. In my Writing to Heal classes, time and again I watch students peel back the layers of their personal stories to discover truths and perspectives they simply couldn’t have accessed without putting pen to paper, or as one student recently said, “putting pen to pain.” There is scientific evidence that writing out an experience—moving it from your head and body to the page—is healing.

Writing also helps us create empathy. In addition to learning about themselves, I see students with seemingly different backgrounds discover similar feelings in their experiences, connecting and understanding each other in ways they might not have without sharing stories. As Maya Angelou said, “Writing moves the I to We.”

And finally, writing can be fun! When you’re sick, boredom and isolation can settle in quickly, easily leading to anxiety and/or depression. Writing is something you can do from bed in small spurts, and it doesn’t have to be for any purpose other than the joy of being creative.

How to Start Writing

Writing a Lyme or other illness narrative can feel overwhelming. You’ve lived through so much. How could you possibly tell it all? Where would you begin?

Here’s some news that may come as a relief: you don’t actually have to write about your illness, at least not at first. In fact, it can be much easier and healthier to start elsewhere. As I describe in the previous blog post, I felt too close to my story when I was still acutely sick, so I played some fun writing games and wrote anecdotes about past travels, which helped remind me that I was once a vivacious person.

Here are some easy ideas for writing about something other than illness:

• Each night, write down three good things that happened during the day.
• Look around the room. Pick an object—a pen, a pillow, a shoe—and start writing about it. You may find yourself using that object as an inroad to another memory or story.
• Write about your day using only two or three syllable words.
• Write about each of your five senses in this exact moment. What do you see, smell, touch, taste, and hear?
• Write a list of five objects or images you associate with your illness story. Pick one of them and write about it. (For inspiration on using an object as an inroad to a larger story, watch Billy Collins read his poem “The Lanyard”.)
• Pick one scene from your story and write about it using all five senses.
• Write a letter to yourself or your illness. (For inspiration, see Lyme warrior Bonnie van Geffen’s “A Letter to My Sick Self”.)
• Write a letter to someone in your story—a doctor, a family member, a friend—telling them what you need them to know (you don’t ever have to send the letter!).
• Respond to the prompt “And after that, nothing was ever the same.” (Credit Douglas Whynott.)
• Write in a safe space. Pick a spot where you feel comfortable but that is not your bed. You don’t want to start associating a place that is meant for rest with difficult emotions.
• Create a self-care list and keep it by your writing space. You might include things like: step outside for fresh air, take a shower or bath, make a cup of tea, light a candle, or call a friend. If you start to feel overwhelmed by your writing, take a break to do something that’s on your self-care list.
• Pace yourself. Can you write one paragraph at a time? For twenty minutes at a time? Do you feel better writing in the morning or the evening? Limits are different for everyone; take some time to figure out what yours are. No matter how involved you get in your writing, set a time period after which you must take a break.
• Write a process journal after each piece you write. As described in Louise DeSalvo’s Writing as a Way of Healing, “keeping a process journal is an important way for us to understand our relationship to our writing and to the act of creativity…it is in understanding ourselves as writers that we optimize the healing potential of our writing.”ⁱ What was it like to write your piece? What feelings did it bring up for you? What was challenging or surprising? What would you like to explore further? Process journals are a great way to reflect and gain perspective, and often language from the process journal can make its way into your piece.
• Remember that writing just for yourself is healing, and it is your choice whether to share your work with others or not.

If you’re feeling ready to write about Lyme or other illness, here are some prompts to get you started:

Safeguards When Writing About Difficult Topics

When you write about an adverse experience, difficult emotions are bound to come up. That’s normal, and part of the process. But you don’t want to get so immersed in writing that you wallow or re-traumatize yourself. Here are some ways you can protect yourself:

Resources

For more information, tips, and inspiration, I recommend:

Writing as a Way of Healing by Louise DeSalvo

The Healing Power of Storytelling by Annie Brewster, MD with Rachel Zimmerman

Opening Up by James Pennebaker

Writing Hard Stories by Melanie Brooks

If you’re looking to write in community, please consider joining my next remote Writing to Heal Workshop through Grub Street Creative Writing Center, running six Thursdays from 6:00-9:00PM ET starting June 11, 2026

Happy writing!

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