I collect hospital wristbands. My first band marks the date March 3, 2009, and I remember the day quite vividly: I visited the hospital to complete an MRI upon the orders of my bewildered doctor who was stumped by my symptoms. When I got home after an excruciatingly long day I tried to tear off the plastic band that had hugged my wrist all day, only to realize the material wouldn't rip.
Living with Crohn's disease
Since being diagnosed with Crohn's disease, I have perfected the movement of wriggling off my hospital wristband -- slowly bringing the band over my knuckles, keeping it intact. Crohn's disease is an autoimmune condition that causes inflammation along the inner lining of the digestive tract. To simplify, I have a hyperactive immune system that can't differentiate between "attention" and "at ease," so its defences are overactive and it willfully attacks my small and large intestines. While promising medical breakthroughs have been made in treating Crohn's -- a chronic, lifelong condition -- there is currently no cure.
My body flips between two states: one that is overcome with disease, and another that experiences tentative relief. Because I was diagnosed with Crohn's at a young age, I've grown up believing in the notion that if I don't eat too much or think too hard, somehow, I will be able to preserve my good health for just a little while longer. Obviously, this balancing act is an impossible one and I require a constant reminder that no matter how hard I try to sit still, the nature of the illness will triumph even my sincerest efforts.
Treating Crohn's disease
I have tried nearly every possible treatment available for Crohn's disease. I've tried immune suppressants and steroids, the latter of which provided me with temporary relief by trading in my inflamed organs with an assortment of vicious side-effects. As each drug failed, my health declined and I was left with a quietness that brought me to unbearable proximity with myself. My teen years are a blur of absences from school and emergency hospitalizations.
Explaining this to someone who is fully abled proved to be an impossible feat.
During these periods, I would imagine an alternative self, a disease-free girl who walked with a bounce in her step. Now that I'm older, I realize that my wishes as a teenager were impractical, since no amount of planning could have accounted for unexpected flare-ups and periods of required rest. Crohn's disease doesn't work like that.
Despite the inescapable physical toll of living with Crohn's, nothing could have prepared me for the intensity of the mental side-effects. As I watched my body deteriorate and continuously resist treatment, my peers graduated into newfound adult experiences. In a world where success is determined by achievement and a malfunctioning body is considered useless, I sunk into frequent periods of numbing sadness. Explaining this to someone who is fully abled proved to be an impossible feat.
Sometimes, even your loved ones quickly accept the fluctuating nature of your illness before you have. You witness their concern decline as they continue on with their lives unbothered, and you feel you are left alone in a deafening silence.
After my diagnosis, the most basic opportunities seemed like an indulgence -- even going to school. I was seeking a sense of normalcy and belonging, and being able to go to school after weeks in a lonely hospital bed seemed like a blessing. Being able to talk to people who weren't interested in a full-symptom analysis felt amazing.
However, not every "returning to school" experience was as pleasant as I had naively expected it to be. In my experience, not all academic institutions are built to welcome the chronically disabled, and though formal protocol has been established to accommodate, it is often never enough or never fully enforced to allow me to return to school at my own pace and on my own terms. Individuals who deal with Crohn's disease, an invisible illness, are often forced to prove in a way that serves to be degrading, that they are in fact ill and deserve sufficient and timely accommodation. These experiences are emotionally damaging and deny the patient the chance to also be considered a student.
Even though I don't believe I'll ever be an expert in dealing with chronic pain, I've managed to overcome a lot living with Crohn's. My definition of "normal" has evolved throughout the stages of diagnosis, sickness and treatment, but I still often feel mentally and physically unprepared when I experience relapse.
The more times I become sick, the more my strength and resilience deepen.
Right now, I'm using a new biologic therapy, which has provided me with the most relief since my diagnosis. This treatment has granted me the ability to participate in normal experiences I often feel like I miss. There will always be times where I experience the symptoms of my disease and have to remove myself from everyday activities. Each time this happens, I am left with no other choice than to pick myself up and find a strength I didn't believe existed.
Each hospitalization, surgery, treatment and procedure has challenged me in ways that I could never have prepared myself for. Though such phases of pain and discomfort eventually pass and I move on to the next phase of seemingly normal life, I live knowing the illness will reappear. But the more times I become sick, the more my strength and resilience deepen. That's why I collect hospital wristbands -- they remind me of a self that was brought to unfathomable lows and found a way through.
To find out more about Crohn's disease this World IBD Day, visit www.crohnsandcolitis.ca.
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