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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101 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!
Elayne, isn’t it the best .gif?!
Thank you kindly!
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!
Thank you!! I hope that we will be friends for the next 84 years!!
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!
I’m glad you found the tips to be helpful! Thank you for all of your support 🙂
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, Jennifer, this is so kind!
Thank you for sharing the things you’ve learned along your publishing journey, and congratulations on your debut!
Thanks, Heather, it is certainly an exciting (and busy!) time.
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.
Angela, I loved hearing about your grandmother and that she lived to be 100!Sorry to hear about your chronic pain and challenges, I hope that things have improved for you now. Sending healing vibes! Alison
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.
Aww, thank you, Alice, it’s so helpful to hear that I’ve inspired you.
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!
Thanks for all of your support, Stephanie! I’m happy that you found the post to be inspirational and helpful. Haha, yes, either super slow or super fast!
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.
Sorry to hear that you also have chronic illness, Cheryl. Thank you for the beautiful words!
Congratulations, Alison. Thank you for sharing your journey and I commend you for never giving up (even after 84 years!). You are an inspiration.
Haha, it IS tough waiting for 84 years! Thank you, Rose!
Thank you for sharing you inspiring story. The grace found in your suffering and perseverance helps points us all to hope and gratitude.
Judy, this is beautifully said! Thank you.
Thanks for sharing your story. I appreciate hearing you talk about persevering and being flexible with your health and writing.
Thanks, Maria. Yes, perseverance is key for both writing and chronic illness!
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!
Hello, my friend! I love that KENZIE’S LITTLE TREE resonated with your daughter, but I do wish that you didn’t have any health struggles yourself. You are also strong like Kenzie’s little tree, Christine! Thank you for the support.
Alison,
Perseverance. perseverance. perseverance – that’s what I heard you say! Thank you for your inspiration and encouragement. I’ve been filling my soul recently with Wayne Dyer, and his words, “Open to everything, attached to nothing,” reinforces your journey and tips to fellow writers. A book creation is a collaboration of blood, sweat and tears, thoughtful ideas, and suggestions. And for a newbie, it’s reaffirming to hear to be open. What a powerful message as well, to conquer personal setbacks with gratitude, learning and personal growth. You also taught me a new word today – had to google, “epistolary.” Thank you!!
Congratulations on your debut! I look forward to reading it!
Hi Gwyneth,
Thanks for the kind words and sharing all of this! You also taught me something as I haven’t heard of Wayne Dyer. All the best to you as your start on your writing journey!
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!
Michael, thanks so much for this heartfelt response. Thanks for the kind words and I’m glad that you found my suggestions to be helpful and realistic!
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.
Thanks, Lynn! Isn’t the Emotion Thesaurus a must-have? I love it!
Thank-you for sharing your personal history and your writing journey. After hearing you read your book with other PictureBooks,eh! authors, it really came to life for me. It stands nicely next to Darcie Naslund’s book “My Mother is not a Super Hero” and Lana Button’s “Tough Like Mum.” Children whose parent struggles with a life long illness will really appreciate reading it.
Hi Marie,
I’m glad you got to hear me read and I loved hearing you read your book with such expression. It was a lot of fun. Yes, those books are good comp titles for KENZIE’S LITTLE TREE, I agree.
Alison, thank you for sharing and the positive attitude in the midst of medical disabling. You are very inspiring and no wimp. I loved your process of recording the positive things in your days and picking yourself up and moving along. One day you might write a picture book on your life that may encourage others in their life walk. Congratulations on your book and wishes for many more.
Thank you for the kind words!
A positive attitude helps overcome the challenges in life, regardless of what they may entail. Thank you for sharing your thoughts on the problem solving similarities that both chronic illness and writing entail. Congratulations on your book and positive thoughts that your illnesses stay manageable,
Hi Diane, Yes, it can be hard to stay positive at times, but it really is helpful. Kind regards!
Thank you for sharing your personal story with us -very inspiring!
You’re welcome! Thanks for reading 🙂
Alison, I have also been dealing with a chronic illness for over thirty years. You may want to check into new research going on with gut health. If you reach out to me through 12×12, I’d be happy to give you some info as to what to look for and what has helped me. Never thought it could be possible. I love that you created a story to help others. I have a few works in progress that will hopefully resonate with kids as well. Best of luck to you. Hope you feel better.
Thank you, and all the best with your stories as well!
Alison, thank you so much for sharing your journey with us. I always need to hear over and over again all the tips you shared…especially the ones about being flexible and being patient. And I am so happy to see the photo from the “Titanic” movie being used in your article. One of the two drafts I will be working on for the month of April has a Titanic theme, “The Titanic’s Littlest Stowaway”.
In your article you shared that you had to approach your story from a number of different forms, angles and points of view before you settled on the right form. Which was good to hear because while working on the Titanic picture book I also had an idea for to also write it as a animated short film script. Even though I have been financing and helping to produce film and TV projects over the years I never gave animation a single thought…but my story is actually yelling at me to write a short animated film version of my story… and I know nothing about animation. That voice will not be denied though. I am learning to give up control and listen to how my story wants to be told. Some times stories can be so bossy. Sometimes I need a little bossing around because I can be so stubborn and have a tendency to get stuck on the original concept. I am still writing the picture book version but I am also learning more about how to approach writing it for a short animated film version as well. (like I need another project….Ahhhhhh!!! ) Sharing your journey can really show us the benefit of letting go and finding the true path to tell our story the best way possible..
Again thank you so much and wishing you great success with all your work.
Thanks for sharing about your process as you write your Titanic story, Sharon! That sounds like a fascinating project. All the best, and thanks for the kind words.
Thank you so much for the encouragement and can’t wait to read your book and recommend your book to our library.
What a thoughtful post! And, what a journey! Thank you for sharing it with us, as well as all the very wise advice you picked up along the way. Cingratulations on your beautiful book!
Thank you, Sonja, and I’m glad that you appreciated my tips!
Thank you, Alison, for sharing your journey. Your post inspires and enlightens my heart. Congratulations to you and Emilie!
Aww, so beautifully put, Charlotte! Thank you!
Alison, thank you for sharing your health journey and how it connects to/reflects your writing journey. Your article resonates with my personal journey this last year – a year in which in one month I was diagnosed with 3-major health issues, each requiring major surgery, and my husband was diagnosed with terminal stage 4 cancer that resulted in his passing the next month. As I’ve dealt with grief and a progression of surgeries (last one was 2-weeks ago, I’ve struggled with what has often felt like a struggle to put words on a page in an industry that is so slow. Because of your article, I’m now looking at how I can take the skills and approaches I’ve used to deal with my personal issues and apply them to my writing process. I’m already finding new ways to move my writing projects forward and rediscovering the joy of writing. Again, thank you for your insightful article.
Judy,
First of all, my condolences for the loss of your husband. What a terrible year you have had 🙁
I am incredibly moved by your words and truly honored to have had any impact on inspiring you to move forward with your writing and to use your experiences to do so. I am cheering for you and sending you healing vibes. Hugs!
Alison
Congratulations on your book! Yay for your perseverance❣️
Thank you, Susan!
Allison this is a great comparison between living with a chronic illness and writing. Thank you for such practical ideas that will help keep us moving forward despite challenges.
I’m glad that you found the ideas to be useful, Lori!
Congratulations on your book! Thanks for sharing your journey through life and writing to getting your book published.
Your story resonated with me because I’ve been learning and persevering from a place between then pain of fibromyalgia, flare ups.
When the pain resides that’s the time I feel the most creative writing flowing through and then I can create art too.
Alison have you heard of a book called THE FULL CATASTROPE LIVING By Jon Kabat-Zinn? He also has meditation videos on YOUTUBE that help with chronic pain.
Thanks for being an inspiration to many pre-published author’s who work alone with their pain. Blessings to you and your family!
Bev, sorry to hear that you live with frequent pain. No, I haven’t heard about that book but I have tried meditation and it can be helpful. Thanks!
Thank you for your very insightful and encouraging post. I lived with a chronically ill parent who passed away recently. Her strength and ability to find the joy and love continue to inspire me every day. It feels like you are passing on a legacy to your children too. How wonderful!
Belinda,
Thank you for sharing and for these lovely words. I’m sorry to hear about your loss and I’m touched to hear about how she inspired you.
Congratulations on your debut picture book! And thank you for sharing your journey through the story’s development. So interesting and inspiring to read about how the ebbs and flows of your writing and your health experiences wove into the story process. “Be open…” and “Don’t compare” are my fave reminders to hear to persevere. Keep strong and well!
Thanks you, Krissy! I’m glad that you found the article helpful. “Don’t compare” is a great reminder and something that I continue to work on as it can be difficult. All the best!
What a journey you have had, Allison. Thank you for your insight and inspiration. Congratulations on Kenzie.
correction: Alison not Allison Sorry to misspell your name.
Haha, I often have people adding the two l’s.
Thank you for the kind words, Nancy!
Alison, Thanks for being willing to share your journey of both publishing and lessons you’ve learned from your illness. I had a bout for several years with UC and know it was challenging. Currently I’m challenged with TBI, and hearing from you is helpful to keep on with perseverance.
Congratulations on your book!
Martha
Hi Martha,
I’m glad to hear that the article resonated with you but sorry to hear about your own health challenges. You are strong!
Thank you for sharing your journey. You provided me with great insight and renewed my perseverance in this writing journey as well. Best of luck in all you do.
Thank you, Adriana. You are very sweet!
Such a great idea for a book – it’ll be exactly what some children need because of their lived experience and other children so they gain insights into that. The extracted page is very poignant.
Thank you, Anne! Yes, I am hoping that the book will be a mirror, a window, and a sliding glass door. Kenzie’s Little Tree also features family fun and adventures throughout the seasons as well.
I also taught special education but now teach in special education Masters programs. Your advice to “be flexible and adapt…strategies based on…fluctuating symptoms” is great advice to writers and also to exceptional children who experience differences that they can learn to manage or work around. Trial and error strategies need to be uplifted by hopefulness. In my opinion, whenever someone shares a success story wrought through trial and error, they also convey hope. I appreciate that you brought us into your experiences and shared your strategies and strength. Congratulations on the wonderful SEL book!
Hi Gigi. This is so interesting, and I love how you made this comparison to neurodivergent children as well. Yes, I did aim to convey hopefulness in Kenzie’s Little Tree because navigating chronic illness/disability/any difficult experience is tough but there are also times of fun and joy in all of our lives.
Thanks so much for your thoughtful post. My husband is dealing with a chronic illness, so your post resonates with me. I have Kenzie’s Little Tree on hold at the library–look forward to reading!
Thanks Ellen, and all the best for your husband in his journey. I hope you enjoy the book!
Thanks so much for sharing your experiences regarding your chronic illnesses, how you’ve dealt with them and how you have been able to persevere and write a beautiful story about life’s challenges. I was a Special Ed teacher briefly during my teaching career and after reading your interview many things resonated with me. Congrats on your new book! Can’t wait to read it!
Hi Carmen! I am happy to hear that the article resonated and it’s great to hear that you were also a Special Education teacher! Thank you!
Thank you for sharing your inspiring journey with us all. As a former physical therapist and early childhood educator, I was encouraged to read of your life experiences, I look forward to reading Kenzie’s Little Tree.
Thanks, Karen! I hope that you enjoy Kenzie’s Little Tree! 🙂
Thanks for sharing your journey. I especially like your “Good news and Gratitude” practice. Looking forward to reading your picture book – my library has a copy. YAY!!!
Hi Angela! Thank you, yes, good news and gratitude can be very helpful when dealing with waiting and passes. Yay, I hope you enjoy Kenzie’s Little Tree! Thank you for ordering it from the library :-).
Alison:
I am so excited for the publication of your book. I live in Dartmouth, Nova Scotia so it is wonderful to see another Canadian in 12 x 12. The Halifax Public Library has pre-ordered 3 copies of you book and I have one of the 3 holds on it. As a retired teacher, I always examined my own experiences to see how they could help my students or be used in a classroom during my 34 years of teaching. Before I left to have a hip replacement in 2016, I borrowed the school skeleton to explain what was happening. I am truly sad that you are dealing with chronic illnesses. I admire how you have used the strategies and strengths you learned by dealing with them in your writing journey.
You are inspiring!
Anne LeBlanc
Anne, Likewise, it is fun to see more Canadians on 12X12! Thanks for telling me about ordering Kenzie’s Little Tree from the library. This is very exciting! Wow, a 34 year teaching career, well done! Thank you for the kind words. I see that we are friends on Instagram, so I will see you online!
You paired your writing journey so perfectly with your health journey. Thank you for being so vulnerable.
Thank you, Brenda! It is my hope that the article will help others and it has been a pleasure reading the responses so far and hearing about how my journey resonates with people.
Thank you for this post, Alison! I have not lived with chronic illness, but I can definitely relate to the writing-related experiences you outlined here. Congratulations on your book!
Thank you, Elise!
Thank you for sharing your story, Alison! I can identify with the ups and downs of treatment plans (and experiments). I’m glad that you have found something that works for you. It’s a good reminder to have patience and gratitude (and maybe some fun) along the journey, for both health and writing.
Thank you, Angela. Yes, so true that there is fun to be had along both of these journeys as well.
Thank you, Alison, for sharing your personal struggles with your chronic illness. You wrote such wonderful comparisons with our struggles writing picture books. I look forward to reading “Kenzie’s Little Tree”.
You are welcome, and I’m glad you enjoyed it!
Alison,
Congratulations on your book Debut!! It is so great to see other author’s success.
I find your book concept to be so very important. I know it will be a great resource for me as a therapist who works with all ages.
Thank you for sharing your tips…being patient is such a problem for me even though the research explains how difficult getting published can be (and how long it takes).
Best of luck!!!