Kumail Nanjiani Tweets About Watching Wife Emily Gordon Fight Undiagnosed Illness
In the time between first feeling symptoms and getting a diagnosis, there’s a range of emotions that might come up — for not only the person who is sick, but their loved ones as well. Watching someone you love battle an illness, without a diagnosis or any idea of what will happen next, can be a frightening experience in itself. In a now-viral Twitter thread, comedian Kumail Nanjiani, who co-wrote the movie “The Big Sick” with his wife, Emily Gordon, about their relationship and her illness, reveals exactly what that experience was like.
On Monday, Nanjiani shared a photo of the hospital badge Gordon’s mother received when Gordon first became sick. Nanjiani had written his name and phone number on it, because, as portrayed in the film, he had never met Gordon’s parents before she suddenly became seriously ill and went to the hospital, where she was placed in a medically-induced coma.
Emily's mom just found this. I'd given her my phone number when she first came to the hospital when Emily got sick in case she needed to contact me. Wrote it on the back of the visitor badge.
She still has it.
Certain objects have the power to pull you back. Wow. pic.twitter.com/kptIxbFTfo
— Kumail Nanjiani (@kumailn) January 8, 2018
Nanjiani wrote that looking at the badge pulled him right back into that time.
“The strongest feeling I felt was this kind of fearful floating. Emily’s condition & disease at that point felt so big & unknowable,” he wrote. “The extreme fear & not knowing & the vagueness of it all created a bubble.”
He explained how during that time, he viewed everything through this “bubble.”
“I remember going to Walgreens and getting angry at someone just buying gum,” he wrote. “Why do you get to live a normal life?”
He said he spent so much energy trying not to think of the worst-case scenario, while every day there was a new theory about what it could be. He also described what it was like in the waiting room (“I played Mario in the waiting room for days on end, & couldn’t hear the sound of him collecting coins for years after that”) and how “unfair” her illness felt.
“Emily is always so full of life & fills a room with her energy & seeing her like that felt vulgar,” he wrote.
Nanjiani then highlighted what so many chronic illness warriors and their families know: how relieving it is to finally get some answers and a diagnosis (Gordon was diagnosed with adult-onset Still’s disease, a rare autoimmune disease).
“I’ll just say, her disease felt so unknowable & now it’s this thing we know. We still deal with it, but it has a name & that is so important for us,” he wrote. “It’s not all of her. It doesn’t define her. But it’s something we’ll deal with for the rest of our lives.”
The extreme fear & not knowing & the vagueness of it all created a bubble. And you just kinda float around in this bubble. Everything you see is through this bubble. I remember going to Walgreens & getting angry at someone just buying gum. Why do you get to live a normal life?
— Kumail Nanjiani (@kumailn) January 8, 2018
I had a family member who had passed away from that disease. And the doctor just said it nonchalantly & walked out. I thought "Well if it is that, at least we'll get to talk to her again. Her parents will get to say goodbye." That was an actual thought I had. Oof.
— Kumail Nanjiani (@kumailn) January 8, 2018
It's still the longest we've gone without speaking since the day we met. Ok. I gotta stop. This is too much. But I'll just say, her disease felt so unknowable & now it's this thing we know. We still deal with it, but it has a name & that is so important for us.
— Kumail Nanjiani (@kumailn) January 8, 2018
Sorry. Didn't mean to type all this. I don't know what happened. I was just staring at that picture & couldn't stop. There's no larger point here. I'm glad she fought so hard. I'm proud of her for being strong. That's all.
— Kumail Nanjiani (@kumailn) January 8, 2018
Her condition is part of her, but it’s not all of her. It doesn’t define her. But it’s something we’ll deal with for the rest of our lives. And that’s ok. Whew. I’m really done now.
— Kumail Nanjiani (@kumailn) January 8, 2018
Hundreds of people responded to Nanjiani’s tweets, sharing their own stories of health challenges and their memories of a loved one who battled an illness.
It’s so hard to keep hearing a different disease name each month. When you get a confirmation you want to cling to that label like it’s a safety raft. And you want to tell your story for the others who are still bobbing in the sea of no answers.
— Lisa Marie Walters (@MSorsomething) January 9, 2018
My husband was diagnosed with MS 13 months after we were married. The disease has altered just about every area of our lives. Sometimes I’m scared of the future. It helps to know we are not alone. My husband is the love of my life. That’s all I really need.
— Ellen (@youngandsmyelin) January 10, 2018
My son was a preemie, 164 days in the NICU. Almost 10 years later, hubby and I still carry our bracelets from his admission. It becomes part of you, like it or not. Your story. The words are faded, but we keep them still.
— Laura Rahman (@laurarahman) January 9, 2018
Having been through a journey of knowable and unknowable sickness, this was moving in so many ways. There are clothes I will put on that remind me of my experience, faces on the TV or foods I ate, and it immediately transports me back instantly.
— Christian T. Potts (@cpotts) January 9, 2018
Nanjiani also called out media outlets who had written about his tweets without including Gordon’s name in the headline, along with his “The Big Sick” costar Zoe Kazan (both outlets ultimately changed their headlines).
Hey @washingtonpost. Big fan. Love what y’all do. Appreciate you covering this. Could you add my wife’s name to this headline please? She is Emily V Gordon, & not just the inspiration, but one of the writers of The Big Sick. https://t.co/H6VkeyzO83
— Kumail Nanjiani (@kumailn) January 10, 2018
she has a name she has a name she has a name: Emily V. Gordon, now a multiply-award-nominated screenwriter. it's HER body & HER illness. the least you can do is put her name in the headline, if you're going to make a "moment" of her life. thanks ???????? https://t.co/BZXxxqdFz9
— zoe kazan (@zoeinthecities) January 10, 2018