An Awkward True Story

Finally, a Movie Gets Chronic Illness Right!

I had a bit of a rant yesterday about Everything, Everything, and how it really doesn’t depict patient experience very well and makes the PI community look like it’s full of loony fakers. I lamented the lack of representation of authentic patient experience and the need for more, and different, patient stories. Enter The Big Sick. This Sundance darling looks pretty amazing. It stars Kumail Nanjiani and tells the story of his relationship with Emily V. Gordon . Emily and Kumail wrote this screenplay about their story and have written in several publications about how Emily was put into an induced coma to recover from an infection. This interview in Cosmopolitan magazine is especially charming.

While the events in the story take place prior to her CVID diagnosis, Emily recently shared receiving her first IVIG treatment. Kudos to her for putting a public face on a rare disease and for being so open in sharing her journey. This kind of openness is necessary for those in our community, in no small part because it gives us someone “normal” to point to, which de-stigmatizes our experiences. We’re not bubble people. We don’t live in isolation from the world, well, most of us don’t, and it matters that we’re not constantly depicted in that way. My hope is that having the positive exposure Emily brings will make our illness more relatable.

Wouldn’t it be great to be able say, “it’s like that woman in The Big Sick” instead of “it’s like the Boy in the Bubble, except...”?

Right now, the most media exposure we’ve gotten is on medical mystery shows, as comedic relief (*cough* Seinfeld *cough*)... in other words, not the most flattering or normalizing representations. It’s hard, I realize, to capture the nuance of such an amorphous disease. It’s not exactly glamorous and it’s not always dramatic in the way a cancer diagnosis can be, but I feel strongly that there are stories worth telling in our patient community, and The Big Sick tells one of them, even if not explicitly “about” PI. This is the kind of narrative our community needs; not another lame trope about how no one could really have this kind of illness.

I’m so excited to see the movie, which comes out in select theaters on June 23, with wide release on July 14, which also happens to be their anniversary (D’awwwww). So, PI community, let’s promote this movie, this story, this representation. Let’s help The Big Sick find an audience beyond our community and do what we can to encourage real storytelling. Check out the trailer here