Having lived with ulcerative colitis for a decade, I thought I knew what it meant to be sick in the U.S. — but when I got cancer, I realized there’s a hierarchy of disease.
“How am I going to get through this?” I asked the doctor.
I’d just learned that I probably had cancer, and my mind was frantically scanning my support system, thinking of how many good friends had recently moved away or left on long trips. I dreaded the nightmare pain of chemotherapy that I’d seen portrayed in graphic detail on television. Maybe worse than that would be the exhaustion, the hours spent in waiting rooms, or fielding phone calls from the health insurance company. I tried not to cry, trapped in a nightmare cancer scenario of my own imagining.
I thought I knew what to expect, but I was wrong. A support network sprang up around me. Friends volunteered to come with me to the doctor, to take my late-night phone calls, and to help manage the side effects of chemo. I was grateful, but couldn’t stop myself from thinking: I’ve been sick for almost a decade! Where have they been all this time?
Nine years before I got cancer, I was a twenty-year-old college student who had just been diagnosed with the incurable gastrointestinal disease ulcerative colitis (UC). Flare-ups, which can happen several times a year, meant months of bloody diarrhea, weight loss, and fatigue. Fever and severe dehydration landed me in the hospital for the first time in my life. More hospitalizations would follow.
I’d never bulldozed over anyone to get my way before, and I didn’t like doing it. Even worse was realizing that it worked. The kindness and reserve I’d cultivated my whole life made people like me, but they were no match for navigating life with UC.
The stress and isolation I felt being severely ill at a college full of high-achieving, healthy young adults led to my first experience with clinical depression. My friends didn’t want to learn about a disease that causes bloody poop, and they quickly lost patience with my desire to talk about my symptoms. My teachers had never heard of UC, and they weren’t inclined to give extensions or allow me to make up tests. My frustration built until I stopped asking for accommodations and instead demanded them, simply stating when I’d make up assignments, and that I would do so for full credit. I’d never bulldozed over anyone to get my way before, and I didn’t like doing it. Even worse was realizing that it worked. The kindness and reserve I’d cultivated my whole life made people like me, but they were no match for navigating life with UC. I became a tough person who I didn’t particularly like or recognize.
Despite all this, I was also lucky when it came to dealing with my chronic illness. A nervous breakdown eventually landed me in the Dean’s office, and – by amazing coincidence – she had been diagnosed with UC two years prior. She understood how severe it was, emailed my professors, and allowed me to come talk to her whenever things got to be too much. When a suitemate found me crying in the common room and I admitted that I hadn’t been able to stop for hours, she walked with me to the school’s counseling center. Here, another happy coincidence: The therapist’s sister-in-law suffered from Crohn’s Disease, which is similar to UC. She provided some much-needed perspective about the possibility of my eventually living a normal life, and taught me mindfulness techniques that I still use to cope with flare-ups.
I didn’t fare as well on the medical front. A series of GI doctors prescribed medication after medication, none of which controlled the disease to their satisfaction. I was consumed with anxiety, knowing the drugs weren’t working, and not knowing what would come next. It wasn’t until I’d been sick for over two years that a doctor finally took the time to sit down and explain the different levels of treatment for UC. I learned that all the drugs that weren’t working were first-line drugs designed to coat and soothe the colon. The doctors weren’t worried. I, however, had spent years uninformed and terrified.
As with many UC patients, things did get better for me. I learned which foods to avoid (in my case, salad), which herbal supplements to take (turmeric is a godsend), and the importance of managing my stress level. I learned the right things to say to cut down on the hours I spent on the phone with my insurance company, begging them to cover the drugs I needed, as well as the hours I spent on the phone with doctor’s offices, begging them to send in the right paperwork to my insurance company. This process happened piece-by-piece, year-by-year. Mostly, I went through it alone.
A decade later, I felt exhausted just waiting for the test results that would tell me I had Hodgkin’s lymphoma. I’d been here before, and I knew what happened next. I’d have to explain to my boss and my friends what was wrong, and defend the effect that cancer was having on my life. I’d have to juggle schedules to make sure someone could take me back from chemo appointments, spend hours arguing with my insurance company, navigate a maze of specialists, and find some way to avoid slipping into crippling depression.
Instead, over the next few weeks, I learned that “cancer” is a magic word.
Say “I have cancer,” and no one asks for explanations or justifications. Instead, they want to know all about the treatment side effects. I could miss as much work as I needed to. Friends flew out to visit me, left work to take me to chemo, and bought me books and games to make the long hours in the infusion suite pass more quickly. I was inundated with texts and calls, everyone just saying: “I’m here for you. Tell me what you need.”
I thought I knew what it meant to be sick in America. As it turns out, that experience differs widely, and one factor is whether or not a patient has a magic word.
My health care team provided such wide-reaching and well-coordinated support that I thought of them as a “cancer machine.” My doctors spent hours carefully explaining my treatment options and prognosis. I was assigned a patient advocate to help me navigate the overwhelming process of chemotherapy and radiation. Insurance barriers seemed to melt in the wake of my new diagnosis code. Even though I lived a block and a half from the subway, a social worker offered to help me find transportation to treatments. She also told me about local support groups and a wealth of activities like concerts, yoga classes, writing seminars, and outdoor adventures that grants make freely available to cancer patients. During every visit, I filled out a mental health questionnaire. When my answers made me sound depressed, the social worker would call to ask if I needed to talk.
I thought I knew what it meant to be sick in America. As it turns out, that experience differs widely, and one factor is whether or not a patient has a magic word — a recognizable word that elicits instant sympathy and understanding, that permeates our culture from Hollywood to children’s books.
This can be an awkward subject to write about, because it sounds like I’m saying cancer patients are lucky. Obviously that’s not the case, especially when compared to people in good health. Compared to patients with other life-altering diseases, though, they often benefit from a game-changing level of awareness and support. It’s not that I begrudge them these things. I’ve been there, and I know they need it. But they aren’t the only ones: a lot of us have diagnoses that don’t get instant recognition, and we are in just as much need of support. When I was a college student with no knowledge of my disease, fighting with doctors and trying to understand what was happening to me, I could have used a patient advocate, and friends and teachers who instinctively understood the severity of what I was going through. Now, I’m in awe at the care I received for Hodgkin’s, and I’ll admit it: during treatment, I found myself looking at the other cancer patients, wondering if they realized how lucky they were.
They don’t have to be the only lucky ones. The magic of the word cancer doesn’t come from the illness itself. It comes from the openhearted doctors, nurses, advocates, therapists, friends and family members who hear the word and want to help. These same people can make magic happen for anyone suffering from serious illness.
Erica Schecter studied Economics at Pomona College and spent three years working in health policy consulting at the research firm Acumen, LLC. In 2016, she underwent treatment for Hodgkin’s lymphoma. She lives in Brooklyn, where she is working on her first novel.
Accompanying Art: Trimet Ticket, Lilac by Suzanne Elizabeth