How Nicola Yoon’s YA Novel Misrepresents Primary Immunodeficiency
An editorial by: Dana Ewachow
In early September, I heard about a new Young Adult novel that had a main character with SCID (Severe Combined Immune Defiency). As an employee of Immunodeficiency Canada (http://immunodeficiency.ca/) , I was excited. Primary immunodeficiencies are rarely presented in the media, beyond the occasional news piece, so finding a book that was predicted to grace the best-seller list felt like a step in the right direction. Nicola Yoon’s “Everything, Everything” was advertised to be the next big hit, with expectations of a movie deal (http://www.mtv.com/news/2261250/nicola-yoon-interview/). It was compared to John Green’s “The Fault in Our Stars”, a love story mixed with the obstacles of disease, and was expected to have the same success.
I searched for interviews with Yoon and reviews of the book, hoping to find out more about her bold choice to take on such a rare subject. I considered contacting her and suggesting an interview. I thought about ways to share the message of her book – since the rare disease community needs all the support it can get! My excitement started to waver as I read the reviews. All of them were positive, but they kept mentioning a “twist ending”. I finally read an article that spilled on the ending and the nagging feeling in the back of my head was confirmed: the main character never had SCID. The big twist was that her mother had a psychological breakdown when her daughter was an infant, and pretended that her daughter had SCID. The twist was that the daughter wasn’t physically ill, her mother was mentally ill.
I bought the book and read it in two days. Although I appreciated the wonderful love story, I was disheartened by the ending. This was the second time I’d seen that exact plot twist. The first time I’d seen it was in the 2001 comedy “Bubble Boy”: a child is introduced with a primary immunodeficiency, the child is kept in isolation at their family home until they reach early adulthood, the sick adult leaves the protective bubble of their home, the adult discovers that they don’t have that life-threatening disease, and the mother reveals that she’d lied to them for their entire lives in order to protect them from the dangers of the world. The same problem is written off right before the end.
This is the second time I’ve seen a story erase the experience of a patient with a primary immunodeficiency. It seems that the rare disease is only used for a unique plot hook, either to make the character interesting or to make their obstacles greater. The disease pushes the story along, until *poof* – it disappears. The disease did its job: it made us care, it made us cry, and it made us turn the pages and watch the movie until the end. The average reader can close their books and watch the end credits, not having learned anything (or worse, being misinformed) about PI.
The misinformation is one of my major issues with Everything, Everything. Primary Immunodeficiencies are not given much public attention. Even doctors typically don’t recognize symptoms of PI unless they’re screening for it, or if they’re in the field of immunology. It’s disappointing to see an opportunity to educate people about a disease carelessly wasted.
Yes, Noon talked about isolation and how if the protagonist went into the outside world, she could get sick and die. She didn’t mention symptoms, other than she’d been a sickly baby. She didn’t mention visiting an immunologist or a doctor, beyond the nurse who visited her house that had apparently not checked her medical records. She didn’t mention any previous bouts of sickness, hospital visits, or IVIG injections. The book only touched on the parts that added to the romance. All people are left with is SCID is a deadly immune disease that you can have until you’re 18 years old, which is a problem because babies diagnosed with SCID don’t live through infancy if they don’t receive a bone marrow transplant or gene therapy. (http://cipo.ca/wp-content/uploads/2013/12/Facts-about-SCID-and-SCID-Newborn-Screening.pdf)
The ending also implies that SCID can be imagined, or worse, faked. This implication is problematic, because people with chronic “invisible” illnesses like PI can spend years of their life trying to prove that their illness is real. Part of the struggle is going to the doctor over and over to prove that they’re not imagining things – there is something wrong. They can be dismissed by health professionals, employers, friends and family members as dramatic, lazy, or even hypochondriacs because of their symptoms. Some patients complain about being suspected of making excuses to get out of work or to get pain medication. The book took an opportunity to bring visibility to an invisible illness, and went back on it at the last possible second.
The last, heart-breaking problem “Everything, Everything” is that it erases the experience of those with PI. The average reader might be satisfied with an ending where they don’t have to worry about the main character’s condition anymore, but the writer Jennifer J. Johnson points out (http://disabilityinkidlit.com/2015/09/04/review-everything-everything-by-nicola-yoon/), as a person with a rare condition and as someone who must be constantly vigilant for the sake of their well-being, the twist ending is an insult. It sends the message that happy endings mean being healthy, which sounds nice, until you understand that some people will never be the perfect version of healthy. So, making someone magically healthy – or like these stories did, making it so the illness never existed in the first place – is giving out another message: happy endings aren’t for sick people. Sick people deserve love. Sick people deserve happy endings. Sick people deserve their own stories, from beginning to end.