News & Events

Hollywood has it wrong: I’m a teenager with an illness, and it’s not glamorous at all

The Washington Post
By Lillie Lainoff September 12

Lillie Lainoff is a sophomore at Yale University.

In 2008, it was all about vampires. In 2011, it was dystopian societies with corrupt governments. And now, 2014 seems to be the year of teenagers with fatal diseases.

As far as Hollywood obsessions go, the first two are pretty benign. In real life, there are no supernatural creatures roaming the streets at night thirsting for human blood, no game shows forcing adolescents to fight to the death. Romanticizing those subjects isn’t that worrisome. A vampire is never going to write “Twilight” author Stephenie Meyer to tell her: “I’m not being portrayed properly, and now everyone thinks I sparkle.”

But teenagers with illnesses do exist. I am one of them, and it hurts to see movies and television glamorize our suffering.

When I was 14, I was diagnosed with an autonomic nervous system disorder called postural orthostatic tachycardia syndrome (POTS) that causes extreme dizziness, fatigue and other debilitating symptoms. At first I was just more tired than usual. But then, as I entered high school, I found myself unable to complete even the simplest tasks. I went from being a nationally ranked sabre fencer to having to crawl to the shower in the morning, my body too weak to stand up.

My mom would wake me up at 7 each morning to lift my legs in the air so the blood that had pooled in my feet, a side effect of the disorder, could more easily make its way back to my heart. Instead of spending my time between classes talking to friends, I hid in the bathroom to take blood-pressure medication, upwards of 20 pills a day. As time went on, I spent less time at school and more at home, in my bed, too exhausted to move.

In the past five years I’ve spent quite a bit of time in emergency rooms and hospitals across the country, and none of the patients I’ve seen were anything like the characters in the hospital portrayed in the pilot episode of “Red Band Society,” a new Fox show premiering Wednesday.

Viewers glimpse the lives of teenagers living in a fictional pediatric ward, including: Leo and Jordi, who are both suffering from bone cancer; Dash, who has cystic fibrosis; Kara, who has an enlarged heart; Emma, who has anorexia; and Charlie, who’s in a coma that is not explained. Most of the characters seem plucked from any high school and placed into a hospital. Their medical conditions are a side note; they look bright, well-rested, everything that patients in hospitals are not. The one exception is a character who is bald because of chemo.

I’ve been to the Mayo Clinic in Rochester, Minn., and Children’s Hospital in Washington. Unlike Dash, who runs around pulling hijinks, the boy I saw with cystic fibrosis was resting on a couch next to his mother, his face tinged a purplish blue. The teenagers going through chemotherapy weren’t racing down the hospital hallways in wheelchairs; they were holding onto plastic buckets in case they threw up. I’m not saying they were never happy. I can still remember the smile of a 6-year-old girl whom I sat next to in a waiting room at Mayo, glimpses of her balding head showing through a floral-printed scarf. While most children her age seem to have boundless energy, she sat quietly. At least half of the patients were attached to heart monitors or oxygen tanks, or were in wheelchairs.

“Red Band Society” is being lauded as a departure from the idealization of teen chronic illness and death in recent young-adult books and movies such as “The Fault in Our Stars” and “If I Stay.” Merrill Barr writes in Forbes that “what audiences will immediately take notice of in Red Band Society is its willingness to not sugarcoat the reality of the patients’ various situations.” But based on the pilot, nothing in how the patients are portrayed is realistic. The viewer never sees a character taking medication, going through a treatment or doing anything that a typical patient does in a hospital.

Compared with “The Fault in Our Stars” and “If I Stay,” in many ways “Red Band Society” (I watched the pilot during a free Web promotion) is more damaging and hurtful because it seems to assume that most sick teenagers can do everything healthy teenagers do — from having enough energy to go to parties to being optimistic about their situations.

Maybe I’d feel differently about the show if the ever-talented Octavia Spencer had been my nurse and had bought me 10 boxes of pizza, like she did for one of the characters in the pilot. I had excellent nurses, but it was clear that they were there to provide medical care, not to be my friends. Maybe if my hospital rooms had had huge windows and freshly pressed, colorful sheets and blankets, and had been large enough to fit 20 people comfortably, I would have been less miserable. But I doubt it. In “Red Band Society,” these props mask the gravity of the kids’ illnesses. But no matter how many cool posters or flat-screen TVs the set designer puts on the walls, they are still the walls of a hospital room.

In some ways the show’s faux-realism could be considered positive. I understand the power of portraying sick teenagers as “normal.” No one should be defined by his or her illness. However, I would be lying if I said that my disorder did not shape who I am. Although my condition is under control, it is something that is always present, that I will have to struggle with. Yes, I am more resilient and thankful for the life I have. But I would give up that gratitude if it meant that I could have never been sick, because, along with newfound strength there is emotional exhaustion. Aside from feeling horrible physically, I became more guarded, unwilling to let even my closest friends know how I was coping. And there is the constant fear that my disorder will get worse again, that I will lose everything I have worked for.

One of the best pieces of advice from my doctor at Mayo was: “Do not wear the bracelet,” meaning that I shouldn’t let my illness become my identity.

I am not my illness. But it is part of me.

According to “Red Band Society’s” Leo, “Your body isn’t you, your soul is you, and they can never cut into your soul.” However, the show’s writers seem to forget that every time you start a new medication or treatment, every time you get a new diagnosis, every time you hear the words “there is no cure,” your soul is cut into. It might heal eventually, but there will always be a scar, a reminder of the pain, the grief.

At one point in the pilot episode, Charlie, the narrator — who inexplicably speaks to the audience while in a coma — says, “Living in a hospital is sort of like going to a boarding school; you have a lot of rules but a lot of freedom.” How would he know? He’s in a coma. In fact, in hospitals there are far fewer people to interact with who are your age. In waiting rooms, parents might talk and try to seek solidarity with other patients’ parents. But most of us are focused on getting to appointments and are too worn down from treatments to form relationships with other patients. There might be a few sentences exchanged here and there, but more often than not the patients I saw didn’t talk to one another.

At the end of the pilot, Charlie says: “Everyone thinks that when you go to a hospital, life stops. But it’s just the opposite. Life starts.”

After hearing those words, I wanted to cry. Life does not start when you go to a hospital. If you’re lucky enough to have a non-terminal illness, life continues, in a warped version that includes more pain and obstacles than any young person should have to experience.


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