Making the invisible visible

Writer: 
August 11, 2017

There were eleven students in Mr. Drummond’s high-school English class. From my seat at the corner table, I furnished a weak smile. Nobody knew how close my tears were.

My insides were being twisted, torn, and set ablaze. The cramping made me sweat, and my head ached in a rhythm. I had experienced belly pain before, but never with such ferocity. Several days later, I would learn that I had ulcerative colitis, an inflammatory bowel disease that arises when the immune system mistakes the digestive system as an invader and attacks it. But I did not know it then, and neither did those around me.

It was 2012 when I clenched my way through that first string of cramps. I did not look sick, so nobody suspected that something was amiss. That is the difficulty with a disease like mine: It hides.

Some disabilities—such as those requiring wheelchairs or similar accessories—are more evident than others. But for university students desperate to maintain good health, the latter category can prove especially frustrating. Patients battling illnesses like colitis—invisible disabilities, as they are known—often meet with doubt.

Doubt was not new for me in 2012, though. Before colitis, doctors diagnosed me with a hearing loss after testing revealed that my right ear only captures sound above 60 decibels. I was four then, but I remember the skepticism. Elementary-school classmates used to scream in my ear and consider any flinch a sign that I was joking. Some even questioned me outright.

Fortunately, hearing loss was easy to explain. I started introducing myself with a disclaimer, and I learned to simulate my experience by putting headphones in friends’ ears and adjusting the volume. To an extent, my hearing disability became a source of pride—a core facet of my identity. Colitis, by contrast, caused a more distinct misery.

Colitis devastates the colon in a way that can make life lonely, confusing, and embarrassing. It operates in a pattern of flares and remissions, and doctors do not know what triggers the onset of symptoms, though most agree that both genetics and environmental stressors play a role. Patients may experience pain, ulceration, bleeding, nausea, diarrhea, fatigue, dehydration, eye inflammation, anemia, and arthritis. Most eat a limited diet bolstered by prescription drugs or antibiotics, and some remove their colons entirely.

Symptoms, then, can be monitored and controlled. More difficult to manage are the social implications. Colitis can feel particularly isolating—and is often considered taboo—because most of its symptoms take place in the bathroom. After all, toilets and tummy troubles make for awkward conversation. It is hard to admit that a meal might cause an accident. It is humiliating to explain that your bowels are broken.

 In this way, invisible disabilities like colitis can carry a dual stigma: There is the stigma related to the disability, and then there is the stigma associated with drawing added attention to it. The latter is often cause for difficult decisions. When my hall mates organize trips to McDonald’s, for example, I cannot participate. I have to recommend an alternative, decline the invitation, or watch as they eat foods I gave up long ago. Usually, I stay quiet. I do not like to advertise my condition.

This worry—this fear of being labeled an inconvenience—made my first semester at Duke exhausting. For weeks, I avoided campus parties, afraid that an accidental beverage might completely arrest my digestive system. Friends begged me to join, and each time I scrambled for excuses. I did not want to subject others to a sob story, so the truth became a last resort. On days when my symptoms hit hardest—when the cramps made me curl up on my girlfriend’s floor—I kept to myself. 

It took finding the right campus community to settle those fears. Those who would go on to become my best friends were among the first to ask about my condition—to wonder what my life was like and trust that what I said was real. There was the EMT whose medical aspirations made him curious, the premed with a hearing loss of her own, the student-mentor who checked in on me at parties. It was not an island of misfit toys that I had found; it was just a living group. But in that group I finally felt at home. I had discovered a collection of individuals who welcomed me and enjoyed me and dared me to share.

Soon, I got used to sharing, and I grew comfortable vocalizing my needs. But the path toward that luxury was bumpy. I had to learn to self-advocate. I had to remember that I am not a burden. Invisible disabilities can be tough to fathom, especially when those battling them may look healthy. But they are battled best when they are battled in honest company. A few good friends can make all the difference.

The next time my symptoms flare, I could very well be in a lecture with hundreds of Duke students. But I will not be alone with my secret. Next time, I will be strong enough to let somebody else know. 

McCarthy is a rising junior majoring in public policy with a certificate in policy journalism and media studies. The president of his selective living group, a reporter for The Chronicle, and a tutor to local refugee youth, he is working this summer for a multicultural newspaper as a member of the Dublin-based DukeEngage program.