Crohn’s and Colitis Awareness Month: A conversation with David Soren
David Soren is an author, filmmaker, illustrator, and story artist who has lived with Crohn’s disease since he was young.
Canada has some of the highest rates of pediatric inflammatory bowel disease (IBD) in the world. As more children and their families face a diagnosis of Crohn’s disease or ulcerative colitis, stories like David’s help shed light on the realities of living with an invisible illness.
Invisible: The (Sort of) True Story of Me and My Hidden Disease, is a middle grade novel filled with illustrations, humour, and heart. Inspired by his own experiences growing up with Crohn’s, the book follows J.J. Sugar, an eight-year-old kid and aspiring artist who is (after many tests) diagnosed with Crohn’s. As soon as he is diagnosed, he meets Norm, “giant, sarcastic, leather-wearing CREATURE”: the not-so-invisible embodiment of his chronic disease, who is set out to ruin J.J.’s life.
For Crohn’s and Colitis Awareness Month, we sat down with David to discuss his new book, what inspired him to share this (sort of) true story, and what being “young and brave with IBD” means to him.
- Invisible is described as a “sort of” true story. What inspired you to turn your experience with Crohn’s disease into a fictional tale with a character like J.J. Sugar and his monster Norm?
Over the years, I tried and failed many times to figure out how to tell this story. Was it a memoir? Was it fiction? Would my experience with Crohn's be relatable? Was I even ready to share this part of myself with the world? Dozens of ideas were jotted down and abandoned. Then it hit me...the way in was to turn my disease into a character! An annoying, chaos-causing biker beast from my bowel who was determined to ruin my life! The story spun out of the relationship J.J. develops with his disease—a journey from mutual contempt to something more nuanced and evolved. It allowed me to turn my experience into something more universal and far more fun to write!
- Why did you choose to portray Crohn’s disease as a character—Norm, the biker beast? What does he represent to you?
My dad had a motorcycle when I was a kid. It was loud, obnoxious, and he’d take me on rides that left my gut roiling. It was the perfect metaphor for Norm. I couldn’t shake the image of my disease driving a motorcycle, me stuck in the sidecar holding on for dear life as it throws its hands in the air, threatening to swerve me off the road. My journey (and J.J.’s) is about finding the courage to take the handlebars and put the devil in the sidecar.
- How did writing Invisible help you process your own journey with IBD?
It started as an act of revenge—a chance to make people laugh at my disease. But slipping into Norm’s leather jacket forced me to see myself from the “other side.” I stopped making fun of my disease and started trying to understand it. Did it hate me? Did it savor every second of the misery it inflicted? Did it really want me to suffer? Was there any part of my dream it could stomach? Seeing myself from Norm’s POV, showed me what I’d been unwilling to admit: like it or not, we’re in this together.
- What do you hope young readers—especially those living with invisible illnesses—take away from J.J.’s story?
My wish is for the book to become an ice breaker, a conversation starter. So many of us keep parts of ourselves hidden. The behaviour often starts at a young age. It comes from a desire to fit in, to appear “normal”. It was handy that I could control who knew about my disease and who didn’t. It was also a huge part of myself to keep hidden. I wrote this book with the hope that maybe it can help others get to the place I got to sooner. So they don’t spend so much of their lives keeping the most important part of themselves invisible.
- You’ve worked in animation and film for years. What made you decide to tell this story as a middle grade book instead of a movie or graphic novel?
I had too much to say about living with an invisible disability for a graphic novel, so I decided to write and illustrate it as middle grade book instead. I stepped away from my animation career for six months to give it my full attention. The whole time, I worried that nobody would publish it. But the day it went out for submission, an editor at Penguin read it overnight and offered me a two-book deal! The follow-up, titled Visible, hits shelves fall of 2026!
- Can you share what it was like growing up with Crohn’s disease in Canada? What were some of the biggest challenges you faced as a kid?
My mom has Crohn’s. Other than her, I didn’t know anyone with IBD when I was young. It was very isolating. Telling people was complicated because the response was always, “What’s that?” When I tried to explain that I had a problem with my bowel and described the symptoms, kids got grossed out. It was easier to keep it to myself.
- Were there moments when you felt isolated or misunderstood because your illness was invisible? How did you cope with that?
Yes, especially when I wasn’t feeling well. Or when kids were doing things I couldn’t— like eating things I couldn’t, playing aggressive sports, sleepovers often took days to recover from. I’d make up excuses to get out of things rather than admit the truth. Luckily, I could draw really well, so I put the focus on things I was good at and drew it away from the part of me I didn’t want people to see. It was a quick fix. But hiding that side of myself did more damage than good over time and led to feeling more isolated and alone than I needed to be.
- Did you ever feel pressure to hide your condition from friends or classmates, like J.J. does in the book?
I felt pressure internally more than externally during my teens and tweens. The whole point of middle school is to fit in, so it’s a tough stage to share anything potentially vulnerable about yourself. As adults, we understand that vulnerability is strength, but most kids and teens don’t have that level of self-awareness yet. They don’t feel safe sharing their insecurities. Sometimes that’s justified, and sometimes we build things up in our minds to be worse than they really are.
- How did your family support you through your diagnosis and treatment?
The book is quite faithful about my family’s support. My mom was my “Crohnie”. Most hurdles I encountered medically, she’d already experienced. My dad was a social worker and skilled at helping with emotional challenges. He also had a wonderful sense of the ridiculous. My younger brother didn’t have any health challenges, but had to juggle trying to be supportive while making sure his own needs were met as well. We were our own support group.
- What role did creativity and drawing play in helping you manage your illness as a child?
Drawing and writing were my escape. I’d enter a state of flow and forget about my troubles for a while as I invented other worlds and characters. I’d finish a drawing or a story and feel good about myself. It was wonderful. It still is.
- What message would you give to kids who are newly diagnosed with Crohn’s or colitis?
Welcome to the club! Nobody chose to be here. You didn’t do anything wrong. You’re not alone. You also just became a way more interesting person!
- What does being “young and brave with IBD” mean to you?
Any young person dealing with IBD is my hero! You have to be incredibly brave to live alongside so much pain, fear, sadness, and anger. Brave to endure all the appointments, tests, treatments, and surgeries. Brave to admit you’re scared and need help. Brave to stay positive and find humour in the darkness. Should you choose to share your story, given all of that—I’d say that’s the bravest of all!
- How can kids find strength and confidence when they’re feeling overwhelmed by their symptoms or treatments?
The most important thing is to let the feelings out. Share how you’re feeling with a family member or close friend. Therapists and support groups can be very helpful. It may take a few tries to find one you like. Try to do things and strengthen skills that make you feel good about yourself.
- What advice would you give to kids who feel embarrassed or afraid to talk about their condition with others?
I get it. I still do too. I have an irrational fear that something horrible will happen every time I consider sharing this side of myself with others. So far, though, every time I’ve pushed past my fear and told my story, my only regret is not doing it sooner. Pro tip: It gets a little easier the more you do it.
- If you could go back and talk to your younger self when you were first diagnosed, what would you say?
I’d give my younger self a signed copy of Invisible and say: “Here. I wrote this for you. Norm says hi.”
Want to win your own copy of Invisible? Share your story (up to 500 words) about living with IBD or caring for a child with IBD on our webs, and you could be entered to win one of three exclusive prize packs, including a signed copy of Invisible!
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Interested in purchasing a copy? Read more about the book and find retailers on the Penguin Random House website.