I was hunched over in the toilet of a New York hotel when I saw it for the first time. A red smear across cheap toilet paper. Tightness gripped my chest. I could have thrown up.
With a staunch family history of colon cancer and inflammatory bowel disease, I wasn’t afforded the luxury of ignorance. The pain had been intensifying for weeks, and my immune system wasn’t exactly thriving.
Four months later, on 10 January 2016, perched on the edge of a plastic blue chair, nibbling a custard cream biscuit, I received the diagnosis of Ulcerative Colitis. The colonoscopy had discovered moderate disease, contained largely in the sigmoid, and multiple bleeding ulcers.
As the nurse handed me a stack of paperwork, I could sense her confusion at my nonchalance. She likely presumed me naïve, perhaps lacking intelligence. Didn’t I understand this was bad?
But the truth is, I couldn’t have been more relieved. Receiving the diagnosis was like shedding a wire-framed bra after the longest day ever. I wasn’t dying, right? Surely that was cause enough for celebration.
Stopping for a cheeseburger on the way home, I gushed across the table to my mom about how blessed I was to have escaped cancer. In recent weeks, thoughts of the worst had crossed my mind. In fact, they’d tormented me. My mom nodded. She’d been there herself, only with less knowledge and less intervention.
So, the idea I could still live, but with some lifestyle adjustments and a few medications, was, frankly, very welcome. I’d pop the steroids with all the diligence of a good patient, I’d follow their regime, and I’d be back to hitting the law books with minimal need for toilet breaks.
But, reader, as my foreshadowing may have revealed, such ideals never came to pass. Eight-week courses of prednisolone would only sustain me enough to scrape by for a few months, coupled with immune suppressants, and anti-inflammatories that thinned my hair and made me nauseous. Safe to say, I kept Holland & Barrett afloat, binging every ginger sickness remedy available for consumption.
And periodically, the symptoms would return. The spasms and shocks would steal my breath and fold me in two, sweating and trembling on the bathroom floor. Once again, my face pressed into a damp student towel, I’d fight to muffle the involuntary groans, to disguise the pain for my housemates. Once again, I’d grapple to maintain consciousness, flush multiple times to rid the remnants of blood from the toilet bowl, deflect the concerned knocks that echoed through the hollow-core door.
I mastered feigning health. Not just for them, but for me too. My mastery became a crutch through the flare and fall cycle, lasting two and a half years until my surgeries, sustaining me through a move back home, new studies, and a new job.
But even through the toughest of flares, only a handful of times did my symptoms alone disable me. Instead, I found myself rendered disabled by the action, or inaction of others.
The raise of an eyebrow or click of a tongue on spotting a presumably healthy young woman leaving an accessible toilet.
The subtle nudge to another on seeing me return from a doctor’s call with blotchy cheeks and a fallen smile.
The advice to make an effort to become more visible in the office, when working from home was a mountainous endeavour.
The unsolicited, uninformed suggestions of aloe vera, turmeric, ginger shots, and magic beans. Sure, chemotherapy-light biological infusions hadn’t done the trick, but manifestation couldn’t fail.
The belief that makeup and heels were a white flag signal of capability.
The slow uptake of doctors to respond to blood anomalies and reports of worsening symptoms.
All I wanted was to do my job, see my friends, travel, exercise, and make questionable decisions like every other ambitious woman in their early twenties. And I did. But it became quickly apparent that I was one of only a few drowning in the process.
As a capable, independent trainee solicitor, accommodations never occurred to me. I wanted to be treated identical to my cohort. I hoped to match their successes, surpass them if I could. Thoughts of difference rarely crossed my mind, and when they did, were fast shut down by a deep-rooted desire to avoid being thought of as weak.
Stupid, I know. I wasn’t seasoned enough to realise my energy was expended at Hamilton speeds compared to theirs. Life hadn’t yet taught me I deserved equal footing, that adjustments were for levelling, not cheating. Disability wasn’t yet a badge I felt entitled to, something I easily identified with. That all came after my stoma.
But, the thing about inflammatory bowel disease, and so many other chronic conditions is this: it’s dynamic.
It fluctuates, ebbing and flowing, in constant migration, the deadbeat boyfriend, the absent father, settling in your life, then destroying it in evenly swift movements. It can’t be gauged by the pallor of one’s skin, or the shape of one’s form. Disease severity isn’t proven by weight loss or weight gain, or the number of tablets in your pill box. Even testing is notoriously fickle.
Absence of evidence is not evidence of absence.
That’s why, on this Crohn’s and Colitis Awareness Week, my message surrounds the purple misnomer. The presumption of linear treatment, the lottery of quick intervention, the diagnostic delays for those dismissed from the off, the covert condition that almost killed me.
Purple represents both disability and IBD, so is especially relevant this past weekend, given it was also the International Day of Disabled Persons (3 December).
So rarely are things how we presume them. Inflammatory bowel disease is no exception. One in two adults do not know the symptoms of Crohn’s or Colitis, and those who do struggle to understand the significance.
Sometimes, it’s life or death. And that’s why every story matters.
Visit Crohn’s & Colitis UK to “cut the crap” and learn more about symptoms, treatment, and research.
I guarantee you know someone suffering, and if you didn’t before, you do now.