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#HowTo Write About Chronically Ill Characters in YA

Credits: Pexels (Leeloo Thefirst)

Included under the umbrella of disability, chronic illness is one of the lesser-known and least represented parts of the disability community. Even though there is no single unified definition of chronic illness, it is generally described as a condition lasting for over six months that can significantly affect a person’s day-to-day life. Despite the general lack of awareness about chronic illness, statistics show that a large portion of the world population has at least one chronic illness or may develop one later in life. Children and adolescents are no less likely to have a chronic illness than adults. Studies show that 20-30% of adolescents in Western countries have at least one chronic condition.

Yet until quite recently, there was little or no accurate or relatable representation of this part of the disability community in literature and media. The representation of chronic illness in literature and film that did occur was often limited or problematic. Chronically ill characters in YA literature and media mostly ended up magically cured, dead, or exploited for ‘inspirational’ content.

This article presents five tips on ways of creating more authentic and complex stories about people who are chronically ill.

1. Avoid romanticizing chronic illness.

Chronic illness in fiction and film is often capitalized on for instant drama in teen love stories, and it creates great tragic moments, for example when someone is hospitalized after being taken away by ambulance. Popular YA novels such as The Fault in Our Stars and Five Feet Apart depict chronic illness both as a death sentence and as something to be romanticized. Audiences pity Hazel and Augustus, who both have cancer (The Fault in Our Stars), and Stella and Will who have cystic fibrosis (Five Feet Apart), feeling inspired by their resilience and dedication to love.

However, in real life, chronic illness is complex, diverse, and far from always tragic or dramatic. In fact in the US, 96% of chronic conditions are invisible. People’s experiences with and responses to chronic illness are equally varied; not everyone wants to or deserves to be pitied.

Character example: Cursed (2019) by Karol Ruth Silverstein. The cover of the book comes with a trigger warning: ‘Chronic pain may cause irritability, sarcasm, and bouts of profanity.’ The story follows Ricky Bloom, who has recently been diagnosed with juvenile arthritis and is going through her parents’ divorce on top of that. Fourteen-year-old Ricky is in pain and justifiably angry, cursing and lashing out. In a world where most chronically ill teens we see are allowed only to be sad and pitiful, this is a refreshing and honest representation of a chronically ill adolescent learning to come to terms with her illness.

2. Write complex characters whose stories aren’t necessarily centred around their diagnosis.

If you choose to write about a chronically ill character, remember that chronic illness, although often invisible on the outside, is an intrinsic part of their life that in most cases will always be present and affecting them – but it does not necessarily have to be their entire story. There is more to the character than just their diagnosis. Chronically ill characters in YA literature are often written as simply ‘the sick one’. Their diagnosis becomes their main personality trait and the driving force of their story (whether they are the protagonist or a supporting character).

More books with chronically ill characters are getting published, but a lot of them still focus on the diagnosis. Although hearing complex and authentic stories centred around illness is undoubtedly important, it is equally important to be exposed to characters in whose stories chronic illness is integral but secondary. Their stories are full of fantasy, adventure, talent, competition, power, and danger.

Book example: YA thriller The Girls I’ve Been (2021) by Tess Sharpe. Most of the novel takes place at the bank where the main protagonist, Nora, and her friends are taken hostage during a robbery. Nora’s girlfriend Iris has endometriosis. During the siege, Iris is on her period and is struggling with severe cramps (one of the symptoms of endometriosis). However, instead of fixating on her pain, Iris uses it to negotiate with the robbers and escape. Although endometriosis is not the focus of the book, it starts an open conversation about women’s health and introduces the reader to a complex chronically ill character.

3. Characters do not have to be cured for there to be a happy ending

The magical or miraculous cure trope has existed for a long time and still remains fairly common. It involves a disabled character who is miraculously cured or given a magical ability that compensates for or cancels out their disability, so that they become happy and ‘whole’. This trope sends a message that you cannot simply exist and be happy with a disability. It erases the representations in the story and negates the character's identity as chronically ill. In reality, people can be both chronically ill and happy.

Character example: Leigh Bardugo’s Six of Crows (2015) is a duology that tells the story of criminal prodigy Kaz Brekker. Kaz has chronic pain and relies on a cane when walking and in battle. He is an anti-hero, smart and ruthless, who can get any job done. In the book Kaz’s disability is not exploited to demonize him, as often happens with morally grey disabled characters. Kaz refuses a magical cure and is comfortable with his disability; he often uses it against enemies who underestimate him.

4. Finally, it is always a good idea to get a sensitivity reader.

Sensitivity readers review and scan a manuscript for any bias or representation problems before the book gets published. Readers whose identities align with the identities of the characters can provide unique insights and recognize details that don’t seem plausible or are unlikely to apply to someone from their community. Even #OwnVoices authors who write from their own experience often use sensitivity readers.

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1 Σχόλιο

very helpful although i disagree with the fault in our stars i LOVE the book

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