Narcolepsy is often misrepresented in media. Accurate representation is crucial for awareness and diagnosis, Dr Aaron Schokman writes for The Conversation.
What do you know about narcolepsy?
As a rare sleep disorder, you might not have heard much about it, or if you have, your perception may have been formed by the limited portrayals in media.
Several depictions of narcolepsy have been made over the years, from Deuce Bigalow (1999), to Rowan Atkinson in Rat Race (2001) and, more recently, on Prime’s series The Boys (2019–24).
But how well do these portrayals represent living with this rare sleep disorder?
More than just falling asleep
Narcolepsy is a neurological sleep disorder where the brain is unable to regulate the normal sleep-wake cycle. The condition affects roughly 1 in 5,000 people.
People living with narcolepsy feel extremely sleepy throughout the day and will often fall asleep in environments conducive for sleep (think sitting for prolonged periods). They also are unable to get restful sleep at night, often waking up multiple times a night and have abnormal sleep cycles.
In season four of The Boys we got to see what a superhero living with narcolepsy could look like, through Black Noir (Nathan Mitchell).
The Boys follows a group of “corrupt” superheroes who are both popular and politically influential, and a group of vigilantes that want to expose them for who they actually are. The show is a satirical critique of right-wing politics and America’s sway towards fascism, and trades heavily in shock value.
In season four, we learn one of these superheroes has narcolepsy. One of the characters notice Noir asleep during a superhero team meeting. When someone kicks Noir’s chair, he wakes and explains “Oh shit, sorry guys, I’m narcoleptic”.
While it is great that Black Noir puts narcolepsy in the spotlight, the portrayal somewhat trivialises what living with narcolepsy is like: sitting in a meeting room at 3 pm on a hot summer’s day is enough to make anyone feel sleepy, but narcolepsy is much more than that.
For anyone living with narcolepsy, sleepiness is always present and oppressive. To experience a similar level of sleepiness, the average person would need to stay awake for 48–72 hours.
In a preposterous turn, we also see Black Noir fall asleep in the middle of a fight scene. Suffice to say, the adrenaline and emotion from a fight would likely stave off falling asleep – but it might trigger one of narcolepsy’s defining symptoms, cataplexy.
True representations, and missed opportunities
Cataplexy is one of the symptoms of narcolepsy. Not everyone with narcolepsy experiences cataplexy, but those that do can briefly lose control of their muscles, and sometimes become completely paralysed for a few minutes after experiencing strong, usually positive emotion (yes, even during sex).
The 2019 movie Ode to Joy features Charlie (Martin Freeman), a man living with cataplexy. Charlie’s central turmoil in the film follows his journey navigating his desire to balance his condition (triggered by joy) and falling in love.
We get to see several examples of a cataplexy attack, though in some instances erring towards a cartoonesque portayal wherein Charlie becomes rigid as a plank and falls backwards. However, some scenes show instances that better approximate reality. We see Charlie looses control of his leg muscles and slowly collapse to the ground during intensely emotional moments.
Viewers with cataplexy might find the film validating or analogous to their own journey navigating relationships. But the film hyper-focuses on Charlie’s experience of cataplexy to the extent it ignores portraying the impact other symptoms has on his life. We don’t ever see Charlie feel sleepy or fall asleep, and narcolepsy is only ever mentioned once or twice even thought cataplexy only occurs in people with narcolepsy.
It is a great example of how pop culture and media portrayals of disorders can fail us. Rom-coms are a genre laden with formulaic tropes. Competing plot lines and limited screen time are perhaps not the best medium to fully convey a condition as complex and nuanced as narcolepsy. The audience could be left with the misinformed impression some people living with narcolepsy experience little to no sleep-related symptoms.
Inaccurate representation can be particularly harmful for individuals who have not yet been diagnosed, and perhaps contribute to the average delay in diagnosis of up to 15 years.
Stigma and functional impairment
In a 2015 episode of The Simpsons, Homer is diagnosed with narcolepsy.
The episode starts off with Homer asleep at work in the middle of an emergency, landing him in hospital. Marge is worried about how much Homer is sleeping throughout the day, sharing vacation photos of Homer constantly asleep with his doctor.
Surprisingly the episode accurately links Homer’s sleepiness to low levels of the brain neurotransmitter that controls the sleep wake cycle, accurate for many people with narcolepsy.
Perhaps unsurprisingly, Homer’s experience of narcolepsy is rather one-dimensional, with the episode focusing on the recurring gag of Homer using his diagnosis as an excuse to get out of performing undesirable tasks:
Dr. Hibbert: Narcolepsy’s merely sleeping sickness, and many narcoleptics do lead normal lives by avoiding stressful triggers like, uh, oh, let’s say…
Homer: Helping with the laundry?
Dr. Hibbert: Exactly.
While reductive, Homer’s portrayal of someone with narcolepsy plays into the common stigma that many people with narcolepsy face: laziness.
Narcolepsy necessitates frequent naps to stave off sleepiness and avoid falling asleep at inopportune moments or potentially unsafe situations. Yet western society often devalues sleep and often conflates the need to nap or sleep with laziness.
The misconception can often lead to feelings of internalised shame, affect help-seeking behaviours and lead to depression and anxiety.
Media and pop-culture are a key vehicle for spreading messages, building awareness, and shaping public opinion through representation. For the average person, popular media is the only representation they’ll be exposed to for narcolepsy and its symptoms.
For those living with the condition or are pre-diagnosis, mischaracterisations can result in stigma and contribute to the extended average delay in diagnosis.
Dr Aaron Schokman, Research Fellow at the Life Course Centre and the University of Sydney.
This article is republished from The Conversation under a Creative Commons license. Read the original article.