Have you ever read, watched, or listened to a story that included a character with inflammatory bowel disease? Chances are you haven’t. There just aren’t many books with those sorts of characters in them. But, why isn’t there more representation for this disease in works of fiction?

For those recently diagnosed with Crohn’s disease or ulcerative colitis (or really any autoimmune disease) life seems to turn upside down.   Friends and family often fail to understand what it’s like to lose control of your bowels, have bloody poops 15 or more times each day, have extreme pain whenever you eat anything, have “complications” like strictures or fistulas, or have “extra-intestinal” symptoms like joint pain or vision problems.  On top of the lack of understanding, people think it’s gross or icky.  They certainly don’t want to hear about your bathroom habits.  Most of them are empathetic and want to be supportive but chronic illness is just that: chronic.  It may get into remission, sometimes for years or decades, but it never really goes away.  While IBD sufferers have no choice but to deal with it forever, others may get burned out and decide it’s easier for them to distance themselves.

“One way to feel less alone in dealing with IBD is to read about characters who suffer with the same struggles as you”

The stigma surrounding bathroom visits leads IBD sufferers to a lonely existence trying to manage our multitude of symptoms in silence, sometimes with minimal support.  One way to feel less alone in dealing with IBD is to read about characters who suffer with the same struggles as you.  While there has been a recent push among publishing companies to publish more books with chronic illness representation (Yay!), there is still a very limited pool of books with characters who have IBD. And not all of them are accurate in their portrayal of the disease.

Here is the list of novels I have found with a character who has IBD.

It’s not a very long list, and you’ll see that there are more romance novels than any other genre.  I’m glad that these authors see the value in showing a character with this debilitating illness succeeding in forging a healthy (and often steamy) relationship.  But I’d like to see more representation across genres.  As a writer, I get why it can be difficult to write about a character with IBD.  Making it a major part of the plot feels didactic, like you’re just writing the story just to show off IBD. But letting it fade too far into the background might diminish the representation of the character’s struggles.  Some of the books on the list do a good job of toeing this line.  I haven’t read all of them, but I do know that a few fall short of accurately representing bowel disease.  I chose to include those books on the list as well, since they are technically IBD representation. IBD can also look vastly different for different people depending on their individual immune system and where the disease is in their digestive tract, so some of these portrayals might still resonate with some IBD sufferers.

Hopefully, the publishing industry will continue to publish the work of authors who include IBD representation in their novels. As more books come out, the fictional representation should get more accurate as the authors build on the literature that already exists and continue to form a larger cannon of accurate IBD books. 

If you know of any fiction novels, graphic novels, movies, or TV shows that have characters with Crohn’s disease or ulcerative colitis please contact me and let me know about them.  I am currently focused on fiction (though there are quite a few good memoirs and nonfiction books about bowel disease).  I have also left out picture books and early readers, so everything is from middle school and up.    If you know of any, please let me know!!