By: Laurel Dorr
For many years, I didn’t have language for my illness. There was no diagnosis to dissect; I didn’t even tell anyone about my moderate symptoms, despite their increasing impact over the years. Language is how I process everything, so in retrospect, it makes sense that I couldn’t understand it myself. I wasn’t willing to seek out the words, to let it be real. The first time I spoke to a doctor about it, I could barely find words to explain what I was experiencing.
For years, I struggled to articulate with any precision or insight about my symptoms, even when they were severe. It’s like my mind shut off the part that connects my body to language. After diagnosis, however, I began to cling harder to language, to narrative. That structure felt essential to helping me make sense of this new diagnosis, this shape that had hardened years of ambiguous symptoms into something real.
Journaling was (and still is) one of the most effective tools for coping with my illness, especially early on. Even when anemia and malnutrition made it difficult for me to think in words, journaling helped me process what was happening to me, not only in my body, but in my emotional state as well. It helped me slowly pull myself back to language, even when it felt too flimsy to hold onto. Even now that my cognition has improved, the introspective skills I gained are helping me articulate my medical experiences a little more effectively.
Around the same time, I did an intensive study in college on creative nonfiction writing. Although the original goal of the project wasn’t related to my disease - and although I sometimes preferred to avoid writing about it - it did give me a space to creatively navigate this new experience. The sessions I spent bouncing the ideas off my (wonderful) professor, finding ways to make this deeply personal topic into something more like art, were some of the most valuable parts of my early recovery.
Despite all those ways of putting my illness into language, there are aspects of this disease that still escape narrative structure. For instance, how do you identify a “beginning” of an illness, when I spent years suffering before the major flare that led to diagnosis? More importantly, what does an “ending” look like with a chronic illness, particularly when even “remission” hasn’t looked the way I imagined?
I often think about higher meanings. Every time a medication fails, for instance, I remind myself that they have each served some purpose, making me better in some small (or not so small) way. That one got me out of a severe flare; the next one allowed me to stop taking steroids. Sometimes, though, those stories are harder to believe. At the end of the day, I’m still cycling through medications, still unsure how I’m going to feel in six months - or even next week. In this way, my illness has taught me something new about narrative: there isn’t always a tidy ending, or a hidden meaning. It’s okay if the story feels out of control sometimes. At other times, maybe it will feel like the pieces are finally fitting together, and that’s okay, too. Finding the narrative of your IBD journey can be helpful, even when some chapters are still unclear.