Life as a Lemon
Invasive medical procedures, embarrassing medications and the struggle to feel pretty. Emma Chapple takes us through her life as a young woman with Crohn’s disease, one awkward moment at a time.
Bad things happen when you don’t go to your usual pharmacy. At my usual pharmacy, I’m one of their best customers. I could walk up to the counter and pick up any medication at all, and the technician wouldn’t bat an eye.
“That’s just Emma,” they would say. “She’s taken it all.”
But that evening, I didn’t go to my usual pharmacy. The details are fuzzy, but I can only assume I was pressed for time. The only problem is, I wasn’t just picking up some penicillin.
I was picking up enemas.
The technician, a petite blonde woman, scanned the label and looked back at me, a fellow petite blonde woman.
“This isn’t for you, is it?” she asked.
They were. It was bad enough having to literally take this medication and shove it. But once again, someone reminded me of my status as a living paradox.
The paradox is this: I, a 20-year-old woman with an affinity for all things fashion and beauty, am living with Crohn’s disease, and all the shit that comes with it (and I mean that quite literally).
Not that it’s too hard to forget. After all, I wear an ostomy bag at all times.
***
I’ve been living with Crohn’s disease, a form of inflammatory bowel disease (IBD) since I was 13 years old. By 15, I was being treated with weekly injections of chemotherapy drugs. And four days before my 17th birthday, I had my large intestine removed and now have an ileostomy in its place.
Crohn’s disease is a chronic autoimmune disease that causes inflammation in the digestive system. Symptoms usually include severe diarrhea, anemia, and weight loss.
Crohn’s was once known as a middle-aged-and-older disease, but is now appearing in younger and younger patients. One in every 150 Canadians has IBD, and cases in children have nearly doubled since 1995.
Though nobody knows exactly what causes it, one thing is certain: Crohn’s is confined to the western world. Potential causes are vitamin D deficiency, hyper-sanitation, and increased consumption of food additives.
Changing demographics aside, the general public still seems to agree that I, a young woman, should not have Crohn’s, and certainly shouldn’t be wearing an ostomy bag.
By all accounts, your early 20s are meant to be a sexy time of Cosmopolitans (both of the magazine and drink variety) and one-night stands.
Crohn’s is a decidedly un-sexy disease. Which is fine by me, I guess, except that there apparently are sexy diseases.
In the past couple of decades, cancer has experienced a bit of a sexy renaissance, thanks in large part to medical dramas and Nicholas Sparks movies. Or at least certain types of cancer – usually something intangible like leukemia or lymphoma. You don’t exactly see Mandy Moore dying of colorectal cancer.
And, that’s really the big issue. Not only do I live with an illness that most people equate with senior citizens, it’s also one that people just don’t like talking about. Like I said, it’s not sexy.
***
When I first began my Crohn’s odyssey, I was deep in the throes of puberty. I was a bitchy, brand name-obsessed eighth grader. The last thing I wanted was something that made me different.
I remember turning red when I told my teachers that I would have to miss three days of school because I was having a colonoscopy. I didn’t tell my friends where I was going.
Dr. Otley was a balding man with big glasses. He was a nice guy – something I never gave him enough credit for.
But when you’re 13, the world revolves around you. All I could think about was how embarrassing the whole ordeal would be.
I didn’t consider that anyone would become a gastroenterologist because they genuinely wanted to help people. To me, they were all weirdos who devoted their lives to looking up other people’s butts. And Dr. Otley was going to look up mine. What a creep.
Of all the medical procedures, colonoscopies are one of the most dehumanizing. It’s not something you’ll ever get used to, no matter how old you get or how many times you do it. And if they give you the option, always take the valium.
I looked at the pamphlet and rolled my eyes. It was on bright pink paper, with “Welcome to Day Surgery!” printed in large Comic Sans. Underneath was a ClipArt of a smiley sun.
Thirteen-year-old me was so over it.
Do they have these pamphlets for everything? I thought. “Welcome to Diabetes?” “Welcome to Cancer?”
But, as soon as I started reading it, the tough exterior gave way.
“I’m going to have an IV?”
I started to cry. Underneath all the sarcasm, I was just a huge wimp.
Whether I liked it or not, I was technically still a kid, which meant I was going to the children’s hospital. As someone who hates children, it was a personal hell.
Here, hallways were not simply hallways – they were choo-choo trains. The hallway – or in this case, the green train – leading to the gastro clinic was lined with drawings from patients. Last month I was in the same building for an appointment at the women’s clinic, and found myself walking down that same hallway. The drawings were still there.
The one nice thing about having a colonoscopy done in a children’s hospital is they give you a general anaesthetic. You fall asleep and wake up an hour or two later with no mental scarring whatsoever. Just, try not to think about what might have happened in the examination room.
***
Seven years after that first colonoscopy, I had become a somewhat-healthy, somewhat-jaded university student with one heck of a battle scar.
I chose a school away from home simply to prove that my illness didn’t own me. I’ve carved out a niche for myself as “the fashion girl.” My love for fashion magazines had been strong before I had gotten sick, and I hadn’t grown out of it.
After years of having my body go through hell, I enjoy the frivolous things in life. Getting my undergrad in journalism was step one in becoming a full-fledged fashion writer.
Maybe I was naïve in thinking surgery would be the end to my problems. After all, Crohn’s never actually goes away. But still, I had a five-year plan and getting sick again wasn’t part of it.
I try to be optimistic, but past experiences haven’t been so kind. For now, all it means is more embarrassing trips to the pharmacy, lots of fatigue, and once again having to explain to people why I just can’t go out today.
I’m nearly one year away from graduating. For now, being sick is an inconvenience. A couple weeks of missed classes, a few undone assignments.
But it eats away at me – will this be the rest of my life? What actually happens once I’m out in the real world? Milestones that any normal person would celebrate become incredibly daunting when you’re sick.
I’m in a liminal space. I could wait for some new, yet-to-be-released medication. I could have more surgery. I don’t really know what I’m doing.
***
Vanity is important to me. You might be rolling your eyes as you read this, but it is. When your health goes down the tubes, your vanity and pride is all you have left.
I rarely leave the house without at least some powder, blush, and mascara on. It took me seven years to even feel comfortable stepping out with glasses on. So when I’m sick, one of the biggest things on my mind is actually how I look.
Some call Crohn’s an invisible illness, but I hesitate to call it that. When I’m really, truly sick, it shows. My eyes are sunken in. I’m pale (or at least, paler than usual). I usually get acne, because I guess my body likes adding insult to injury.
My sick-girl uniform is usually some form of pyjamas or sweatpants. I would never show myself in public dressed like that. So a heads up – if you see me going to the store in sweats, then it means something is seriously wrong.
As for hospital gowns (or Johnny shirts, as they are also known as for some reason)? No. Sweatpants I can live with, but hospital gowns are the ultimate defeat.
A hospital gown is surrender. It’s me finally admitting that my illness has gotten the best of me, that it has forced me into an ugly, shapeless rag that doesn’t even close in the back. Seriously, who designed this thing? At least give me some dignity.
As it happens, most of my embarrassing moments take place at the pharmacy. This time I was there for suppositories instead of enemas.
“I’m going to prescribe you Salofalk. It’s a suppository,” Dr. Otley said.
Maybe my reply was a little too enthusiastic.
“Emma, do you know what a suppository is?”
I did not. I learned quickly.
Since then I had been on and off Salofalk for a few years, and last December, I was on again. I’m thinking next time I’ll have to go to Shoppers Drug Mart in Groucho glasses.
“Hello, I am not Emma Chapple here to pick up my medication that I will definitely notbe shoving up my ass later.”
I think luck dictates that the one day you don’t care how you look is the day you run into somebody you know. In this case, it was Alex, an acquaintance from high school.
Of course, she looked fabulous. She was also working in the Beauty Boutique, so I can only assume this was attributed to months of free makeovers and discounted cosmetics.
And there I was – ill-fitting yoga pants tucked into mud-cakedHunter wellies, hair that hadn’t been brushed in some time and makeup that had just about come off.
When I left, I kept my head down and tried to hide the Rx bag. It was as if I thought Beauty Boutique employees also had x-ray vision.
***
I can laugh about it all I want, but seven years with Crohn’s has truly fucked me up.
For one, I am terrified of gaining weight in my face, thanks in large part to a long bout of steroid treatment in high school. Sometimes I’ll just stand in front of the mirror and push my cheeks back to envision what I’d look like with a thinner face.
One night this year, I was in the editing bay, piecing together a video news report. When it was time to add my on-camera bit we had filmed earlier, I froze.
“We can’t use this,” I said.
“Why not?”Asked my partner.
“My face looks huge. We’ll have to re-film it.”
The only problem was we had filmed it that morning, in front of the building where the report was. Now, we were at the other end of town, and it was nighttime. There was no way.
I flashed back to tenth grade. There I was, hunched over my laptop. I had just gotten out of the shower. My hair was wet, my makeup smudged all over my face. I stared at the screen. The words were staring back:
Rank the grade 10 girls @ CPA:
Ugliest: Emma Chapple… She has a huge face!
In the words of Jeff Goldblum, “Well, there it is.”
Ever since then, I’ve been obsessed with the size of my face. In the back of my mind, I know I look fine. But a part of me still sees that awkward, moon-faced tenth grader. I don’t think she’ll ever go away.
If every women’s magazine article ever is to be believed, having a warped body image doesn’t make me special.
But, maybe my fear of dating does.
I’ll say it again: Crohn’s is not sexy. Ostomy bags are even less so. If you’re a guy and a girl with an ostomy turns you on, frankly I’m a little worried.
I’m 20 years old, and have never had a boyfriend. I’ve been on a total of two dates, none of which resulted in a second date. This fact usually comes as a shock to people who don’t know me well. I don’t really want to say that I was too busy being sick to look for a boyfriend, but that’s basically what it is.
I guess I’ll find somebody someday. That’s what my friends tell me when I feel left out of their dating conversations. I just don’t think I’ll find that somebody in my early 20s.
***
There’s a lot I haven’t talked about. I haven’t talked about the memories I’ve suppressed and the anxiety that comes when I do remember. I haven’t talked about how all this has affected my family – but maybe that’s not my story to tell.
I don’t know who I might have grown up to be had I not had Crohn’s. Would I be less bitter? Probably. But, I do have Crohn’s and that won’t soon change.
For now, I’ve just got to deal with it. If these past seven years have taught me anything, I’m pretty good at dealing with things.