Writing and Publishing Takeaways from Life with Chronic Illness
Almost twenty years ago, I was diagnosed with ulcerative colitis (one type of inflammatory bowel disease or IBD), followed a few years later by two forms of arthritis. Life with chronic illness ebbs and flows. It demands skills and backup plans because the human body is a puzzle, and it can be tough to find that just-right piece.
As with chronic illness, the journey toward publication presents ups and downs, twists and turns, and problems to be solved. In fact, much of what I’ve learned from my health challenges has supported me in publishing my debut picture book, KENZIE’S LITTLE TREE (Orca Book Publishers), illustrated by Emilie Leduc. I’m sharing my takeaways with you in hopes that these might resonate, help, or inspire.
Be open, flexible, and willing to make changes.
I largely ignored my first symptoms of IBD, hoping that the illness would run its course like a flu. When my issues continued, I tried various things like an elimination diet, acupuncture, an all-cabbage-juice diet (low point), supplements, and multiple medications. This trial and error taught me to be flexible and adapt my strategies based on my fluctuating symptoms.
In writing KENZIE’S LITTLE TREE, I remained open to suggestions from critique partners, my agent, and eventually, my editor. After listening to others’ suggestions, I added more sensory language, more show and less tell, and flipped the POV. The title also changed numerous times!
Being flexible and open to suggestions and changes during the revision process is a crucial step to strengthening your manuscript.
Be patient and don’t compare.
Chronic illness flares are difficult. During my first few flares, it felt like my symptoms would never improve, and it was especially tough not to compare myself to the healthy people around me. However, after experiencing a few flares, I learned that eventually they pass, and to be grateful for the help offered by those healthy friends and family members.
We all know that publishing is slow. One of my critique partners and I periodically text each other that GIF from The Titanic, “It’s been 84 years…,” as it sometimes feels that way! To help with this scarcity mentality, I now make a monthly list in my calendar called “Good News and Gratitude,” where I record little things (“Got my new draft badge!”) and big things (“Got my book cover!”).
I highly recommend making a list of your own! It’s fun to read, and it’s a great reminder that things actually do happen each month, which makes it easier to resist comparisons.
Find mentors (and mentor texts!) and a supportive community.
Throughout my years with chronic illness, I’ve discovered the joy of connecting with a supportive community, whether it be healthcare professionals, other chronic illness warriors, or family and friends.
I am also grateful to have found support in the kidlit writing community through courses, critique groups, mentorships, online social media platforms, and groups like 12 x 12. In the world of publishing, surrounding yourself with the supportive kidlit community is key!
Also, do not underestimate the power of mentor texts! KENZIE’S LITTLE TREE was shaped through reading, re-reading, and studying many amazing picture books.
Utilize the right resources and tools.
It has taken me years to find the just-right foods, exercises, and medications to manage my illnesses. Thankfully, I’m currently in a bit of a groove, but these tools continue to evolve along with my symptoms.
As with my health journey, I’ve found resources and tools that are good fits for my writing, such as courses, guidebooks (hello, The Emotion Thesaurus by Ackerman & Puglisi), articles, podcasts, blog posts, webinars, and conferences.
It takes trial and error, so try out as many things as possible, and remember that what is most useful for you will continue to evolve as your needs change and grow.
Problem solve, and don’t give up!
Dealing with multiple illnesses and all that entails – medications, side effects, diets (remember the cabbage juice?) – requires a LOT of problem solving and resilience. I’ve learned to work through issues as they arise because I want to be strong for myself and my family.
We all know that writing requires much problem solving! When I first set out to write KENZIE’S LITTLE TREE, a book about kids like my own who live with a chronically ill or disabled parent, I started by interviewing my own children about their thoughts and experiences.
From there, I drafted a concept book about life with a chronically ill parent, but this didn’t flow well or feel engaging enough for a young audience. After that, I tried epistolary fiction in which a child wrote back and forth to her mom at the hospital, but I wanted a story that depicted a longer time span, so I again went back to the drawing board.
My third attempt was a character-driven narrative about Kenzie, who planted a little tree that was a bit fragile, but surprisingly strong throughout the seasons, just like Mom. Thankfully, and with a bit of rule-of-three magic, this one stuck!
Writing requires constant problem solving and a drive to persevere. This can be difficult, but it is also a fun and interesting way to keep the mind active.
I hope that some of my learnings from life with chronic illness will speak to you wherever you are in your writing journey.
ALISON MCGAULEY is special education teacher and the author of KENZIE’S LITTLE TREE (Orca Book Publishers), illustrated by Emilie Leduc. As a chronic illness warrior, Alison is passionate about writing books that speak to children and caregivers who are impacted by illness or disability. She also loves crafting stories that feature humor, SEL, and the natural world. Alison resides in Ontario, Canada, with her family.
Alison is offering a copy of KENZIE’S LITTLE TREE (US or Canada) to one lucky winner in our April Check-in. Share your comments below to earn one entry.
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25 Responses
Oh, I love that comment, “It’s been 84 years.” I can so identify.
My mother had UC and as an RN, I ran an endoscopy department in a hospital for years. I’ve seen all the pain and issues that disease can cause. Thanks for sharing your journey. Congratulations on persevering and on publishing KENZIE”S LITTLE TREE.
Haha to the 84 years!
Thanks for sharing your connection with IBD, and for the kind words 🙂
Alison, as the mother of a 32-year-old son who has been disabled since birth your health journey resonates with me in a compelling way. I understand all too well the problem solving and resilience you have needed to cope with your particular difficult diagnosis. I appreciate the comparison you have drawn between dealing with your illness and the tenacity that is required to become a published PB author. KENZIE’S LITTLE TREE sounds like an amazing book and learning about its various stages of creativity was so informative. Congratulations and I wish you the best of success in your career.
Susan,
Thank you for sharing your story as well. I’m sorry to hear that you have also gone through difficult times with your son’s diagnosis and appreciate your understanding. Hugs!
Thank you so much for sharing your health and writing journey. Your words of wisdom inspire us all.
Best Wishes,
Judy Demers
Thank you, Judy, this is so kind of you to say!
You are brave! Thanks for sharing your lessons of health and publishing
Aww, thank you, Karen! I try to be strong like Kenzie’s little tree. 🙂
God bless you! My son-in-law has the worst form of ulcerative colitis, so I understand what you are explaining a bit. It is a beast. Thank you for sharing your story and congratulations on KENZIE’S LITTLE TREE. I look forward to reading it. Wishing you all the best!
Thank you for the well wishes, Karin, and I’m sorry to hear about your son-in-law. I hope he will find a treatment that helps soon.
Alison, I had to laugh because I’ve sent (and received) that “84 years” .gif many times regarding publishing stuff!
Congrats on this lovely book being out in the world!
You are a warrior! It’s been 84 years 😂 Sending that back and forth helps keep me sane! Great article! So glad you’re my CP and friend! Your book is beautiful and important!
Wow, what an inspiring post! Thank you so much for opening up about your journey with chronic illness, and sharing these wonderful tips with us. Wishing you all the best!
Thank you for sharing your struggles to help others. Perseverance is important in so many facets of life–we certainly need it in writing. Sending strength and healing to you.
Thank you for sharing the things you’ve learned along your publishing journey, and congratulations on your debut!
Thank you for this post, Alison! My grandma had ulcerative colitis amongst other things (she made it to 100, after all), so extra congrats to you for learning and growing from this and getting your book out there to help others! I’ve been suffering from chronic pain and other issues for years as well. It can be disheartening how these things can make the smallest task seem like a mountainous climb. My writing suffered too, for years my favorite writing spots caused physical pain, even brainstorming at the laptop, and that caused more anxiety about the pain, which made concentration even harder. Your comparisons to writing aspects, and keeping on, being grateful, appreciating a supportive community, are so spot on! Congrats again.
Thank you for sharing this post! You certainly have had to constantly problem solve both with your health challenges and with your writing. Your advice is truly inspirational.
What an inspirational post, Alison! Thank you for sharing how life with chronic illness has given you skills to apply to writing as well. Such great advice. And yes, this business does feel like “84 years” most of the time sprinkled with “go as fast as you can” the rest of the time. Congratulations on a beautiful book!
Congrats on your book and perseverance.
As another individual with several chronic illnesses I empathize with your experiences of the ebbs and flows of the illness and the frustrations that can bring to writing. May your fragile tree continue to stand strong.
Congratulations, Alison. Thank you for sharing your journey and I commend you for never giving up (even after 84 years!). You are an inspiration.
Thank you for sharing you inspiring story. The grace found in your suffering and perseverance helps points us all to hope and gratitude.
Thanks for sharing your story. I appreciate hearing you talk about persevering and being flexible with your health and writing.
Hi Alison,
Thank you so much for this wonderful post sharing your journey with chronic illness and how it you’ve learned to navigate it while also pursuing your publishing/writing dreams. It is incredibly resonant for me as I’ve dealt with my own personal health struggles. You’ve inspired me to be more patient and flexible as I navigate my new normal and remember that the support of the Kidlit community is priceless! Congrats on your debut of KENZIE’S LITTLE TREE!! I’ve read it to my little one and she wants to be just like Kenzie!
Alison, thank you so much for sharing your personal journey with a chronic illness and relating it to the ups and downs of writing kidlit. Your advice is spot on fantastic and a great reminder that even though things move slowly, they still move but ultimately we each have agency in making things happen. Really appreciate all you wrote. And, congrats on the book! Can’t wait to read it!
Thank you Alison for sharing your poignant picture book, Kenzie’s Little Tree. Thank you for reminding me to be flexible, to problem solve and to remain open to the suggestions of others. Iv’e also use The Emotional Thesaurus by Angela Ackerman and Becca Puglisi.