Everything, Everything is WRONG with this Movie

Hollywood Get's It Wrong

I’m not going to lie. I got super excited when I saw the promos for “Everything, Everything,” thinking it would be the story of how a girl decided to embrace her life in spite of her illness, which is apparently a PI, SCID specifically.

I was wrong.

Let’s start at the beginning. The movie is based on a book by author Nicola Yoon and focuses on a young woman who is trapped by her illness. She is kept inside and isolated from the world under the guise of protection. You guys already know that I’m not here for encouraging you to hide from life. This movie seems, on its surface, to be about getting out there and embracing life, regardless of your limitations…

BUT - and this is a HUGE caveat - it’s not about that. It’s basically about the lengths to which a parent will go to protect a child and the lengths to which that child will go to escape those confines. There are huge problems I have at nearly every plot turn. Why would a nurse go along with all this? Why wouldn’t a child as old as Maddy realize via a quick google search that her treatment was inconsistent with medical norms?

I’m further annoyed at the depiction of PI as being “allergic to the world.” We’re not. At all. We’re not allergic to the world, a SCID child without proper treatment would have died long before Maddy’s age, and would be much more sick. Now I am not a doctor, but it is why organizations like the Immune Deficiency Foundation and SCID Angels for Life fight so hard to ensure there is newborn screening for SCID in every state at BIRTH. Spoilers: She’s not sick. Her mother has been basically pretending for her entire life.

Yet again, our disease is the tool of a villain. Ok, maybe not a villain, per se, but an overprotective mother that seems to suffer from mental illness. Time and again, these tropes of people or parents faking illness, and particularly MY illness, makes me seem less trustworthy somehow. I’m tired of these exploitive story lines and these kind of (very limiting) tales.

This is especially problematic because we’re a small disease community and we’re full of under- and over-diagnosis. We’re often a target of people with somatic symptom disorders. We have to fight for understanding in every area of our lives. I’ve had to explain the particulars in so many situations for so many different reasons. Sometimes, I’ve not been given the opportunity to withhold my diagnosis when asking someone to stay away when they’re ill. Then I’ll be told I should really just get some vitamins or do some juicing… You’ve all been there, I’m sure. I’m just tired of not seeing a reflection of our experience in the media, which is part of why this blog exists. 

Where is MY love story? Where is MY experience reflected in the media? Where is my voice? It’s out there… if you know where to look. Stay tuned!