There’s no instruction manual on how to process a life-changing diagnosis, when minor symptoms turn out to have major consequences.
I only remember it in fragments.
I remember the clock on the wall in front of me continuing its habitual ticking as the world around me seemed to blur. I remember the doctor standing at the foot of the bed in navy scrubs. The brief squeeze of my shin in consolation of the life sentence I’d just been diagnosed.
Tick… tick.
I remember the smile I plastered on in hopes of covering up the empty stare I gave back. I remember thinking of my university, of being taught to nod no matter how silly you may feel. I remember the bite of the tears I so desperately tried to hold back. The squeak of trainers as the doctor left the room and shut the door.
Tick…tick.
I remember reminding myself how to breathe. I remember how the sheets of the bed felt suffocating, how the room was spinning even though I was laying down. I remember shutting my eyes and praying when I opened them this would all go away.
Tick… tick.
I remember the rustle of bags as my mom entered the room, the click of the door behind her. I remember the bright yellow face of a balloon in her hands. I remember her smile and hopeful eyes. I remember seeing the words “Get well soon” on the balloon, my mom uttering the words “hospital gift shop”. I remember thinking there is no longer a reality where I get well soon.
Tick…tick.
“I fully understand why people are addicted to opioids” is what I kept myself from saying out loud to my mother, who sat peacefully playing Scrabble on the hideous blue couch across from me.
In that cold, sterile hospital room, I was grateful for exactly three things: painkillers, my parents, and the nurse who would come into my room at six o’clock every morning to give me my antibiotics, ensuring I was always awake to see the sky lit up in the most beautiful orange as the sun began to rise over the tree tops in the suburban neighborhood just outside my window. A reminder that life continued on.
I became familiar with the processes of the hospital. The monotonous beep of my IV, the minute my meals would arrive, and exactly when the nurses would come around to switch shifts. In total throughout January I had been to the emergency room four times, admitted to the hospital twice, and had one surgery. A surgery I would come to find out I probably didn’t even need.
In the hospital I watched everything happen through a tiny lens as my entire life was put on pause. As doctors callously threw around diagnoses as if they weren’t a life sentence.
I had been on enough antibiotics to kill an elephant and enough painkillers to send you to the moon. But the mysterious, debilitating pain in my abdomen persisted, and, though I can complain about many medical misgivings, my symptoms were (for the most part) never ignored by doctors, and thankfully backed up by countless abnormal blood tests, CT scans, and an MRI. At first, they said it was appendicitis. But when the appendix came out and the pain persisted, the doctors began to throw around the term “autoimmune”.
Crohn’s disease is a type of inflammatory bowel disease where the digestive tract becomes chronically inflamed due to the immune system mistakenly attacking it. Longterm, this could lead to strictures in the intestines, possible intestine removal and colostomy bag, and an increased risk of colon cancer. Worldwide, it’s estimated that 6 to 10 million people live with various inflammatory bowel diseases. Like most chronic illnesses, it causes extreme fatigue, nausea, weight loss, and abdominal pain that has often been compared to that of childbirth, though I wouldn’t know how accurate that is.
Oh, and it will never go away.
I’m a part of the “lucky” third diagnosed with Crohn’s in my terminal ileum. I’ll spare everyone the in-depth anatomy lesson, but my digestive system, to put it simply, is fucked.
Crohn’s disease is nothing new. People are diagnosed every day. They learn to live with it. They get on. But there is no grief quite like forgetting who you were before the illness became the revolving factor of your life. It’s a feeling I’ve found to be particularly difficult to process. One day I woke up sick, and now I will be sick every day for the rest of my life.
There is no getting better. Only tolerating.
I am a 20-year-old international student who moved across the Atlantic alone for university. I love to travel, spend time with friends, and be as active as I can. I ran my first half-marathon in October and had plans to run another come springtime. I loved attending my classes and going to university. I was eating well and going to the gym at least three times a week. I was in every regard, a healthy, well-rounded individual, who at the time thought she had everything planned out.
From this, I hope you can deduce the two most prominent pieces of my character. The first being how highly I value my independence, and the second how much I love structure and control over my life.
The loss of control and structure came first. As with any health complications, it was completely out of my hands. It didn’t matter how many emails I wrote from my hospital bed, or how many colour coded boxes I filled in my planner. This wasn’t another thing for me to erase, and it became hard to ignore how the doctor’s pitying glances practically spelled out “you’re not going back to school”. No amount of tears was able to wash away that terrifying conclusion.
In the hospital I watched everything happen through a tiny lens as my entire life was put on pause. As doctors callously threw around diagnoses as if they weren’t a life sentence. Though, however temporary that lack of self-autonomy was, the true loss of my independence started to show itself in bits and pieces.
I dream of opening my eyes and struggling to remember what it felt like to have had the hardest part of my morning be simply waking up.
I found it first in a drug called dilaudid, an opioid used to treat severe chronic pain. Less popular than morphine, but much stronger. After six days of numbing my system, and a come down I can only describe as making me want to unzip my skin and pull out my hair strand by strand, I was switched to an oral oxycodone.
Painkillers are always nice. They take away the sharpness and blur the world at the edges. But I have bad eyesight as it is, and I’ve gotten tired of not being able to see clearly. The high they give is only blissful when you have a choice.
And while I have been able to make some killer addict jokes lately, the one-liners will never make up for the fact that I will require and rely on infusions and medications for the rest of my life else risk having my existence reduced to excruciating pain and irreparable damage.
Don’t even get me started on what that means for me as an American regarding pressure to find a job providing decent health insurance in the future. A whole other fiasco that might melt the Scottish mind.
The exhaustion weighs over me heavily, draped like a blanket, though I’m not yet sure whether it’s comforting or suffocating. I suppose two things can be true at once.
But true relief comes when I’m able to shut my eyes. In my head, I could be anywhere. Be anyone. And when the pain is dull enough, I’m allowed the simple fallacy of pretending. Retreating into my consciousness to conjure up comforts that I may never experience, evading responsibilities and stresses that are positioned precariously over me. A mindset I always seem to regress back to when I can’t bear to recognize myself.
But the pressures of work and insurance, of university, of the potential loss of my visa due to absences, and of the stress to my parents, it all lingers, even in the slight respite of peace. A newborn thought whose wailing just refuses to be ignored. The university’s visa compliance, future job opportunities and insurance care little for how I’m faring. The world doesn’t speak in comforts, only cash.
I was actually able to prove the doctors wrong and return to university, though only in brief increments. I wasn’t offered much of a choice. As an international student, I’m not allowed a hybrid school option, health crisis or not. So had I not been able to return, I would’ve had to reapply for my visa and spot at university, essentially being forced to take an unwanted gap year.
Whether my return was fueled by determination or spite for the university’s visa compliance office, I’m still undecided. I am beyond grateful, however, to have the most supportive parents to back my decisions. I truly wouldn’t be able to do it without them.
But even with that support, I can’t say that it gets better every day. I can’t even say it’ll get better soon. There’ve been more bad days than good, and I know there’s plenty more to come.
In the quiet moments of the night when I find myself all alone, when the footsteps of my flatmates fall silent and the light ceases to seep through the curtains of my room, I am consumed with the knowledge that this is forever. And yet, when sleep is able to find me hidden between racing thoughts and streams of consciousness, I dream of only one thing.
I dream of opening my eyes and struggling to remember what it felt like to have had the hardest part of my morning be simply waking up. I dream of struggling to remember what it was like to live each day where I couldn’t imagine any respite from the pain. But, most importantly, I dream of a sky lit up in the most beautiful orange, as the sun rises across the horizon. The start of a new, perfectly ordinary day, and a reminder that life continues on.
