Today kicks off Crohn’s & Colitis Awareness Week. Some of you already know that I’ve had inflammatory bowel disease since early childhood and that it follows me through adulthood like an unwanted intestinal Drop Dead Fred. Awareness-raising is a nebulous concept to me because I’m never not personally aware of IBD, which is sometimes irritating. We’re always together, I can’t shake it.
If I don’t want to hear about it, even after all the years we’ve spent bound to each other, why would anyone else be interested? The thought of a week’s worth of dedicated conversation around inflammatory bowel disease reminds me of the scene from Rear Window when Grace Kelly says “Today’s a very special day.” And Jimmy Stewart’s curmudgeon replies, “It’s just another run-of-the-mill Wednesday. The calendar’s full of ’em.”
I struggle with whether cases like mine are even good for raising awareness. Most patients won’t get sick as toddlers. They won’t experience blood loss as severe, or prolonged hypokalemia, or pick up life-threatening infections while hospitalized and immunosuppressed. Some patients, usually those with ulcerative colitis (my original diagnosis, later changed to Crohn’s), respond wonderfully to the same surgeries I had and essentially consider themselves “cured.” For others it’s a lifelong burden. Whose stories would new patients and their families rather hear?
If it’s hard for you to visualize a disease as relentless, which is how I’d categorize mine, I will share an uncomfortable story. (Every IBD story is uncomfortable, which is why patients rarely talk about it—which is, in turn, why so few people understand it. That’s why Awareness Week exists.) In grade school I had a proctocolectomy and was subsequently given a j-pouch. To do this, the surgeon removes your large intestine and rectum, and leaves about two centimeters of what is called rectal cuff tissue.
The “cuff tissue” is there to connect to the pouch, an internal reservoir made from your small intestine that allows you to use the restroom normally. So, again, two centimeters is what I was left with as a kid. In my thirties, that laughably minuscule parcel of real estate is still “characterized by ulceration” in some of my scope reports. It’s monitored for dysplasia, which would necessitate its removal, at which point I’d probably end up with a permanent ileostomy.
My immune system isn’t only hellbent on destroying that tissue, it possesses all the grit and determination of Scarlett O’Hara vowing to never go hungry again. And so, unsurprisingly, I belong to the cohort of patients whose inflammation intrepidly expands into new territories. As a teen I developed painful joint and skin complications commonly associated with IBD. Eye discomfort caused by chronic episcleritis arrived in adulthood. All of those issues improved or disappeared entirely once I was back on immunosuppressants.
What does it accomplish, outlining this for strangers or even for friends and family? How much thought do others really give your illness? I have an aunt who was there throughout all the early hospitalizations, blood transfusions and operations. During my last big flare-up in 2017, she saw me emaciated, my complexion unnatural and hair stringy from malnutrition. Dehydration kept me so shaky I could barely steady a fork to take a bite from it. My wife asked me not to shower then unless she was home to stand guard; low blood pressure made me a fall risk.
Taking in this sad, sickly spectacle, my aunt sincerely suggested that a multilevel marketing vitamin she sells would restore my health.
“I can’t absorb anything right now,” I told her, not bothering to explain that her vitamins were nutritionally worthless anyway.
“Your doctor said that?” she asked, confused. “How do they know?” A self-described health and nutrition educator, she knew nothing about malabsorption.
Even to those closest to you, who have the most exposure to your experience—perhaps your parents, siblings or partners—there are inscrutable facets of every disease; internal scars known only to those who carry them. (That’s not only a figure of speech: many j-pouch patients retain painful scar tissue after abdominal surgery.) It’s not just a function of illness, it’s a byproduct of our existence. We all carry something heavy that’s entirely our own, whether it originates in hospitals or combat zones, in painful splits or our childhood homes.
What I’d like most for Awareness Week, which has turned cloying in recent years, is for it to recognize that nuance. Who are we trying to educate? Are we looking for real conversations that promote understanding or are we merely pleading for sympathy? Does the Crohn’s & Colitis Foundation really think that adults are interested in raising awareness of their illness by donning t-shirts adorned with doodles of toilet paper rolls alongside phrases like “daily effort”? By sharing infographics cataloguing our worst GI symptoms, as was suggested last year? (This year’s graphic is better.)
What are shirts with aggressively self-pitying messages, like last year’s “Invisible & Painful & Exhausting & Stressful & Incurable,” meant to accomplish? Personally, after a lifetime of dealing with a tedious illness that has left its stamp all over my body and interfered, at one time or another, in nearly every area of my existence, I’d prefer something more understated. Maybe a shirt that says “Shit happens.”
Cranky Lesbian is a disgruntled homosexual with too much time on her hands. Click for film reviews or to follow on Instagram.