Chronic Illness and the Friend Factor

When my best friend Peggy and I were fourteen, and we’d just started freshman year of high school, we liked to hang out at our neighborhood pond. It was peaceful and we could just walk and chat and make disgusting jokes about ridiculous things. It was our place.

One day, out of nowhere, probably in the middle of talking about how much I loved John Taylor from Duran Duran, I got terrible stomach cramps. Then I puked on a pile of goose shit (yes, I still have that image in my head and sorry, now you have it in yours). Peggy had seen me double over in pain before. She knew I often dashed for the girls’ bathroom at school, and sometimes she stood outside and heard All The Noises. She knew I’d been to several doctors and they hadn’t yet been able to figure out what was happening to me. This must have been the tipping point, so to speak.

“What do I do, Jen?” she cried. “How can I help you?”

I didn’t know how to answer her; I was so freaked out and humiliated, I couldn’t even begin to figure out what my needs were. All I wanted was her to not have to ask these questions to begin with.

Many months later, I was finally diagnosed with Crohn’s Disease, which is a form of Inflammatory Bowel Disease (IBD). Nobody but Peggy and a few other friends knew, and they didn’t fully understand what it was (back then, you couldn’t just Google the hell out of it). I told nobody else, because duh, it was totally embarrassing. It was about having diarrhea, and not being able to eat the foods everyone else is eating, and of course, puking on goose shit when you’re supposed to be chilling with your BFF.

I lived with active Crohn’s throughout high school and college, and even into “new adulthood.” (I have been in remission for a while now, knock wood.) There were times when I was healthy and didn’t feel disabled at all. There were times when I could barely get out of bed, let alone leave the house. Often I could mask my symptoms to the people around me, and often I just could not. I was always worried about being the friend who was a drag, who couldn’t keep up, who sometimes had to bail completely. The way a person reacted to my illness became a good barometer of whether or not we had a future as friends. When someone went beyond the compulsory “Are you okay?” and asked, “How can I help you? What do you need?”…well, that meant the world to me. I knew this person was a keeper. It gave me the strength to learn how to respond, even if it was to tell them I didn’t need or want anything at that moment, but thank you.

I’ve never written fiction about living with Crohn’s, and to be honest, I’ve never wanted to. Perhaps because I still feel what I felt for years growing up: that nobody wants to hear about my annoying, humiliating misery. Yet I know, intellectually, that this is a shame, because there should be more characters in YA literature who live with chronic illnesses like IBD. These are your non-flashy, day-in-day-out medical conditions that come with symptoms and restrictions. These are your teenagers who may not be dying, but struggle daily for what they perceive as a normal quality of life. Who always feel “other” in some way. Whose relationships — with their families, friends, and peers — bear that particular layer of stress.

I guess the real problem is, if a character’s chronic illness doesn’t directly impact the story or change her/him in some way, do you fade it into a background trait, like you would with ethnicity or a skill? Is it a minor element of their backstory, like divorced parents? If you just stick it in there for the sake of diversity and representation, would that feel gratuitous? Maybe the only way to answer these questions is to try these options and see what flies.

As an author, whenever you’re thinking about something that interests you, you have to ask, “Where’s the story here?” So when I was doing early brainstorming for my novel YOU LOOK DIFFERENT IN REAL LIFE, I looked at my own experiences with disability and the disabilities of people I know, and realized the answer to that question, for now, for me, is friendship.

It was the memory of that moment at the pond with Peggy, of her asking in frustration and love, “How can I help you?” that brought me Justine, the narrator of YLDIRL, and her classmate Rory. Two girls who were best friends from toddlerhood through elementary school, until Justine was old enough to question whether or not this friendship was working for her. Not long after Justine dumps Rory, when they’re 11, Rory is diagnosed with an autism spectrum disorder. (Why autism? Let’s just say I was inspired, and challenged, by several important people in my life.) Now 16 and thrown together by the filmmakers who have been documenting their lives, Justine has to figure out how to see Rory as a person rather than an autistic person, and whether she wants to be with this person again. When Justine has the opportunity to help Rory when Rory needs it most, she digs deep into their shared history to do that. I loved, loved, loved writing this thread of the story.

What do you need? How can I help you?

They’re simple questions, but we don’t always have the presence of mind or comfort level to ask them.

Go ahead. Ask. The person may want or need your help; they may not. Either way, the answers to these questions create wonderful possibilities in life and in literature.