Why I'm Boycotting the Movie 'Everything, Everything'


Recently I was recommended a book called “Everything, Everything” by a friend, about “a girl allergic to everything who lives in a bubble house.” I thought it was great that someone was interested enough to have read it because she had a friend with multiple chemical sensitivity (which she assumed it was about). I was intrigued, and excited that some mainstream coverage was happening.

 

As it turns out, the main character in the book, a teenager called Maddy, lives in an air-locked, filtered, super clean “bubble house” due to a condition called severe combined immunodeficiency syndrome (SCID). This is a genetic condition where specialized lymphocytes of the immune system do not function properly. All sorts of viruses, bacteria and fungi can cause fatal illness, even normally relatively harmless ones. This disease is often known as the “boy in a bubble” disease, after the press coverage of a boy called David Vetter in the 1970s and 80s with SCID. Most children nowadays are diagnosed within a year or two due to the severity of constant infections and genetic screening.

Spoiler: Maddy falls in love with the boy next door, and risks going outside to run away with him. This sets off a chain of events whereby she discovers she doesn’t actually have SCID. Her mother decided she did because she had an emotional breakdown after the death of Maddy’s father and brother in an accident.

It seems a wasted opportunity. This book, and now movie, could have been a really good story about how rare illness patients can find joy and love, and provide insight as to what their everyday lives are truly like. Instead, this book lapses into tired and insulting cliches.

The overprotective/emotionally disturbed Munchausen’s-by-proxy mother who imagines Maddy’s sickly infanthood to be a rare, life-threatening disease and isolates her from the world.

This is a terribly harmful stereotype, one that many parents (particularly mothers) of seriously ill children have had to deal with. Doctors, neighbors and even family members have been known to call childcare services on these parents, and there have been cases of medical kidnapping by authorities. The idea that a parent experiencing these delusions could just cloister away their child for over a decade without any medical specialist review speaks more about fear-based urban myth than reality.

The at-home patient living an idyllic life, hidden from the world.

Maddy’s life is portrayed as rather uneventful, a dull gilded cage kind of existence. She is homeschooled online, has art projects, reads and that’s about it. Her character has not been seriously ill since she was a baby, because her mother had their isolation house built. This is completely inaccurate. In my experience, living with a non-functional immune system means serious illness will happen, no matter how careful people are. Life is a hectic roundabout of hospital visits, specialists and treatments.

The patient’s ignorance and lack of motivation.

The way Maddy’s character is depicted really says a lot about the common conception of the chronic illness patient. This is a young woman with internet access who doesn’t even know the basics about her lifelong health condition, and describes it vaguely as allergic to everything. She’s spent her entire life trapped in a house, but even that is not incentive for her to investigate further. She doesn’t seem to show much interest in the outside world until the boy next door opens her eyes to it all. She has unquestioningly accepted the limitations of her diagnosis and resigned herself – a child perhaps, but a teenager? Never.

I would like to contrast this with reality:

The chronic illness life of today is far from socially isolated and ignorant. There are informal networks all over social media, official associations and personal blogs for many different health conditions. Many of us have friends from all over the world with similar health challenges, and we are always exchanging suggestions, ideas and our treatment experiences. Neither is it the stereotypical “whine-fest,” or jumping on the latest health fad bandwagon. People are talking biochemistry, genetics, sharing podcasts from medical specialists, forwarding medical journal articles and are involved in political activism. And yes, this includes the teenagers. Patients, or their parents, spend years fighting tooth and nail for diagnosis and treatment.

The movie will bring SCID, and by extension chronic illness as a whole, into the limelight, but in a very inaccurate way. It’s important that as a larger chronic illness community we all unite behind the SCID community to dispel the damage this could do, and try to turn things to our advantage. Having a book and a movie like this in the mainstream’s attention may serve as a catalyst for conversation where we can better educate people on the reality of life with serious health challenges. Being well informed will really help us to be taken seriously in such conversations.

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Lead image via Everything Everything Movie Facebook page

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