Visit The Mighty to view a version of this article.
It was a beautiful, hazy day in August when I was formally diagnosed with Crohn’s disease. From over the phone, the doctor’s words seemed in such stark contrast to my surroundings that I had trouble digesting them. It was warm, and I was exhausted; all I could mutter was, “OK.”
Appreciating the reality of being diagnosed with a lifelong, incurable chronic illness wasn’t on my mind. Instead, assigning a name to the beast taking up residence in my abdomen had left me feeling a bit relieved, honestly. Maybe even a bit hopeful. When the illness had been nameless, it had felt so daunting to manage. A disease with no identity left me with no treatment options. Now I’d have options to make life more livable again. Now I could move forward.
More importantly, with a concrete diagnosis, I could answer that lingering question: Was this all in my head?
It wasn’t by accident that I wondered if I could be exaggerating my symptoms; the idea was placed there firmly by one of the first doctors who treated me. I had already been passed between a few different physicians when I met him. I had continued to return to the clinic, hoping someone could help with the pain, nausea, bloating, frequent bathroom trips and unexpected weight loss that had refused to subside.
During our brief encounter, he feigned interest in my file, looked up, sighed and replied with a sense of boredom, “Jess, what you have is the flu. I need you to suck it up here.” I was prescribed bed rest. I was told I looked “young and healthy.” In that moment, the doctor’s pejorative feedback left me feeling alone and weak. I was apparently failing to keep myself in good health. Walking out of his office in frustration, I questioned my decisions leading up to this point. Was I just “weak?” Was I the one causing these symptoms in some way? I would follow this same daunting, self-accusing train of thought each day until a formal diagnosis was made.
I would keep at it, though.
While I waited on results from blood work and stool studies, I focused on wrapping up classes with at least a passing grade. I occasionally drank beer with friends to numb the pain and forget about my dysfunctional body. I showed up to my job as often as I could, even though I couldn’t get through much without running to the staff bathroom. A stack of my call-out notes sat in the staff meeting room for all to see, listing “diarrhea” as the culprit.
The doctor’s new theory was that it wasn’t the flu, but rather traveler’s diarrhea, even though the results didn’t indicate any present infections. I took antibiotics as I was instructed, and I said, “Thank you” as everyone complimented me on my thinning frame.
By the morning of my college graduation, I was consuming a diet of mostly mashed potatoes to manage my symptoms. I remember lying exhausted in my bed until the last possible minute, saving all my energy for the events of the day I had spent years working towards.
Later that night, while everyone arrived for the graduation party, I stood in the bathroom and stared at a considerable amount of blood in the toilet. Was it time to panic yet? “No,” I told myself “Everyone is here for your party – you can’t disappoint them.” Besides, we weren’t even sure that it was anything, yet. I would emerge from each trip to the bathroom with a smile plastered on my face.
I soldiered on. Because, I don’t like to be called weak. I’d needlessly suffer in solitude, instead.
My saving grace was weight loss, some proof for the medical professionals who couldn’t hear the person sitting in front of them, saying something was wrong. I was assigned food journals to assure my doctor I was eating enough. I completed mental health questionnaires. I followed suggestions to replace gluten and dairy in my diet, even though it was the “healthy” vegetables that felt like fire in my gut. I was instructed to prove myself innocent of being the root cause to my body’s malfunctions.
This cycle would continue. I’d attend an appointment, be sent home to rest and call back in “a week or two” if symptoms didn’t improve. I’d call back, they’d test for the flu and infections, as it was assumed that I had, and I’d wait for an appointment to review the results.
Finally, and after far too long, I traveled to a new state to find answers to my questions. Within a few months of transitioning to the care of a new gastroenterologist, I would receive a proper colonoscopy, which would reveal my true diagnosis.
As the nurse started my IV to get things ready for my procedure, I didn’t fear what the outcome might be. Instead, I wept from the physical and mental exhaustion of carrying on in a broken body for so long. In this diagnostic scope, I hung all my hopes that this might be my last stop in the journey to end the mental burden of the unknown. That someone might say, “I believe you.” It turned out I would be right.
As I ended my call with the doctor, I began to shed the mental weight and pain I had been carrying for so long. I took my first steps as a woman with a chronic illness and vowed that Crohn’s disease would find a formidable enemy in me now.