IDF President & CEO John Boyle recently talked with Emily V. Gordon, the real Emily from The Big Sick, to get the scoop on the story that so many in our community can relate to.
Not many people find themselves checking into the hospital with what appears to be a super flu, as the character Emily does in The Big Sick. The sudden onset of symptoms was a shock to not only her but also to her friends and family. While the movie, based on actual events in the life of Emily V. Gordon, portrays the symptoms as a sudden onset, the reality was a bit different. "When you make a movie like this you want to both honor the condition but realize that viewers don't want to get bogged down in the details,” said Gordon during our chat with her.
Like many in our IDF community, the real Emily found herself in and out of the doctor’s office a handful of times, trying to solve her mystery illness. It wasn’t until the ninth visit that she was admitted to the hospital due to impaired breathing. When her parents received a call telling them their daughter was in the hospital, they were shocked. "I was hiding my illness much of the time, pretending it wasn't as bad as it was,” said Gordon. Her parents were left waiting, hoping for good news as each specialist diagnosed Gordon with a different illness. In fact, an early version of the movie had multiple specialists diagnosing Emily with multiple illnesses but this was later taken out because of how complicated and confusing it became.
"What I have is not very easily diagnosed or categorized,” continued Gordon. “They didn't know how to treat me or what to do with me." It wasn’t until February of 2017 that she received a new diagnosis, Common Variable Immune Deficiency (CVID), a type of primary immunodeficiency disease (PI), on top of her original diagnosis of Adult-Onset Stills Disease.
Regardless, dealing with a chronic disease is no easy feat. “I felt isolated. No one understands this. You feel like a bore. No one wants to talk about how you’re sick again,” says Gordon. “I’d lie about why I wasn’t meeting up with my friends.”
Since her diagnosis though, she has learned to be more transparent and that has been nothing but beneficial. Her doctor appointments are on the calendar kept by her team to ensure nothing gets in the way of her treatments. Now, when nervous about a treatment change, she feels comfortable enough to reach out and share with those around her, which she recently did through an Instagram post where she received overwhelmingly supportive responses.
“This past year has been amazing,” Gordon tells us. “I went from limping through life, technically being ok because I wasn’t hospitalized. That was my bar – that I didn’t need to be hospitalized. I’ve truly embraced it this past year. I’ve found support when I didn’t really know I was looking for it. I’ve learned that I’m not alone,” She says, and that has made all the difference.
Emily is busy working on her next projects. She and her husband, Kumail Nanjiani, are nominated for an OSCAR® for Writing (Original Screenplay) for The Big Sick. Follow Emily on Twitter and Instagram.