Mystery Diagnoses and The Big Sick

By Annalise Mabe

Last September, my stomach began to ache in a new pain–a more severe pain than I’ve ever known. While I’ve had Crohn’s disease for ten years, I had mostly been in remission up until this point. So, when I started to feel like I was being gutted with a sword, I panicked but tried to be hopeful, tried to think that maybe all I needed was half a bottle of Tums.

Like Emily in the 2017 true-story-based movie The Big Sick (based on real-life Emily V. Gordon, co-writer of the movie), my symptoms started small. For me, it was a sharp pain whenever I ate anything, and for Emily, it was a rolled ankle and the onset of flu-like symptoms. She brushes these off, insisting she’s fine like I did until my partner basically dragged me off the couch and told me we were going to the hospital.

Of course, we all want to think that nothing is wrong with us, or if something is wrong, that it’s something that can be fixed quickly, that we can go about our normal routines soon after. Emily discounts her symptoms, telling Kumail she “just, like, fainted a little at work,” and likewise, I told the ER doctors about my pain, but also told them I have Crohn’s, so they wrote my visit off as just a flare-up.

The problem in both of these cases is that there was something worse, something more urgent and needing of attention lurking beneath our surfaces, and we didn’t really want to believe this to be true.

In The Big Sick, Emily’s condition quickly worsens. She’s sweating in her hospital bed barely able to keep her eyes open. In my case, I came back to the ER three more times with increasing fevers and sharp waves of pain that persisted. Emily is intubated, or put into a medically-induced coma so doctors can remove a mysterious infection that is spreading in her body. I was finally admitted to a room and monitored for days, put through multiple CT scans and blood draws, and only allowed to consume water, ginger ale, and chicken broth.

The whole situation in both scenarios is completely frustrating. We as patients are left with questions: What is wrong with me? Why is it taking so long? What’s coming up on the scans?

In the movie, Emily’s parents, played by Ray Romano and Holly Hunter, arrive soon after. They do a good job of playing the worried-sick parents who are trying to play catch-up and understand what’s happening to their daughter as a montage of five or so doctors robotically ramble off medical lingo while Romano tries to take notes, asking doctors to repeat words, and clarify spelling of terms they’re unfamiliar with.

Image description: Holly Hunter, Ray Romano, and Kumail Nanjiani sit together on a couch facing a doctor in his office.

Real-life Emily V. Gordon and Kumail Nanjiani have done a brilliant job conveying the complete chaos of trying to keep up with this foreign, mechanical lingo while trying to understand what’s happening with their daughter, and they show so clearly the struggle of patient advocates who quickly have to verse themselves in these niche medical fields and basically become experts in order to try to helped their loved one.

This, to me, is so particularly relatable because when I was first diagnosed with Crohn’s as well as a brain lesion, my mother read every peer-reviewed article she could, just like Holly Hunter who is glued to her laptop and iPad for Emily’s entire hospitalization. Our mothers immerse themselves in the literature, bring notes and files to our appointments, and become almost experts themselves because that’s what is needed to help us most. This movie shows that scramble for information and answers, that grasping at straws that we all do when someone we love is ill, and the writers and director, Michael Showalter, portray this impeccably.

Image description: Holly Hunter and Kumail Nanjiani sitting in the hospital waiting room, Hunter with glasses on and laptop at the ready.

The Big Sick shows the reality of chronic illness and all its mundane moments. This movie is not all drama and dark lighting and tears and death and sick kids. This movie shows the whole spectrum, the whole story: waiting for hours through the mundane, the boredom, the insanity, the pacing, as well as the confiding of stories, the ordering of pizza, the laughing, the screaming. It’s genuine in its portrayal of all of these moments and feelings that come along with being sick, and I’m thankful for that.

Image description: Emily’s character and Kumail lounging across from each other on a couch reading books.

The night before Emily’s surgery, Emily’s mother tells Kumail: “I don’t know how I’m going to sleep tonight.” Kumail says, “You wanna stress eat?” And it’s this levity that makes this movie so good, and that makes this not a sick-kid movie, but a funny and poignant rom-com that just happens to involve a sick-kid.

Kumail goes on to reassure Emily’s mother saying, “These doctors know what they’re doing.”

“No they don’t,” her mother says, “They’re just winging it like everyone else.”

That has to be my favorite line in the movie because it’s the most honest, and the most relatable as a patient. While doctors generally are trying and doing their best, they are just people, too, who make mistakes, and definitely, at times, are winging it.

In the end, the doctors find out that Emily has AOSD–Adult Onset Still’s Disease, which is a rare form of Still’s disease characterized by symptoms that make it appear similar to other inflammatory and autoimmune diseases, making it hard to pinpoint or diagnose. She’s brought out of the medically-induced coma and starts her journey of recovery starting with physical therapy.

In my case, doctors finally found out that I needed surgery to remove twelve inches of my small intestine which had become inflamed, leading to an obstruction and a subsequent sepsis infection. Doctors told me that I should be glad that I came in when I did, that I should have been in the ICU, and that I could have died.

                       

Image description: left: Black and white photo of real-life Emily V. Gordon who has light colored hair, cute bangs, and is wearing a dark colored dress with a bow at the chest. Right: Annalise Mabe (hi, it’s me) at infusion site wearing fiancé’s green-blue flannel, gray jeans, and glasses.

Now, real-life Emily and I both post about our infusions on Instagram (@emilyvgordon & @annalise.gray), writing about what it’s like and how our illnesses still affect us. In a comment to a follower, Emily leaves us with this advice: “Keep asking questions. Keep insisting on health. It took me ten years so keep living either way.” The Big Sick embodies this fight and shows us why it is so important not to brush off our symptoms, to investigate them, and it shares this true story of surviving through chronic illness with humor, humility, and love.


Annalise Mabe is a writer and editor for Chronically Lit.