“Hi, I’m Carol…” (Bernandi et al., 1999) she says as she lags off the ending of her name, closing her eyes and dropping to the ground in sleep as her escort waits in the doorframe stunned. “I have narcolepsy, a sleeping disorder. It isn’t the worst thing you could ever have. I’m just not allowed to fly an airplane, or drive a car, or work in a gun range” (Bernandi et al., 1999) she giggles. This character, Carol, would continue to have these “narcoleptic attacks” throughout the film Deuce Bigalow: Male Gigolo where she would perform random activities (for instance, bowling) and then suddenly drop to the ground asleep. This depiction of narcolepsy is common in media, and follows the trope of a person randomly nodding off and falling into a deep sleep while doing various activities until they suddenly jolt awake. Movies and TV shows like the one previously mentioned typically depict the condition in a comedic context. However, this promotes detrimental misconceptions about this serious disorder.
Narcolepsy is a chronic sleep disorder that affects the sleep-wake cycle of an individual (National Institute of Neurological Disorders and Stroke, n.d.). The disorder is categorized into two types: Type 1 Narcolepsy (formerly classified as narcolepsy with cataplexy) and Type 2 Narcolepsy (formerly classified as narcolepsy without cataplexy). In Type 1 Narcolepsy, low levels of the hormone hypocretin causes rapid eye movement (REM) sleep to occur at the wrong time (Lee, 2020). Individuals may experience excessive daytime sleepiness and cataplexy – sudden muscle weakness (or loss of control of muscles) that may last several seconds to several minutes and may cause head bobbing/nodding, knee buckling, and jaw dropping, etc. (Lee, 2020). The low levels of the hypocretin hormone in some cases may be due to an autoimmune disease where the immune system attacks the body’s own brain cells. However in many cases the cause of the low levels is unknown (National Institute of Neurological Disorders and Stroke, n.d.). In Type 2 Narcolepsy, individuals also experience excessive daytime sleepiness, though they do not experience cataplexy and have normal levels of hypocretin (Lee, 2020). Unlike Type 1 Narcolepsy, the specific cause of Type 2 Narcolepsy is unknown, but individuals with family history of either Type 1 or Type 2 Narcolepsy have an increased probability of having Type 1 or Type 2 Narcolepsy (National Organization for Rare Disorder, n.d.). In addition to the common symptom of excessive daytime sleepiness, both individuals with Type 1 and Type 2 Narcolepsy may experience sleep paralysis, fragmented sleep (frequently waking up during sleep at night), or hallucinations when they are either waking up or falling asleep (Narcolepsy Network, n.d.). Though roughly 1 in 2000 people have narcolepsy (approximately 200,000 people in America per year and 3 million people worldwide), only 25% of people with narcolepsy are estimated to have an official diagnosis (Narcolepsy Network, n.d.). Important contributing factors to this are the common and widespread misconceptions on the disorder, many of which are perpetrated by movies and TV shows.
As mentioned earlier, one common distorted portrayal of narcolepsy on television and in cinema is the sudden sleep spells that cause a collapse. Unfortunately, many people believe this to actually be a feature of narcolepsy. According to one study, conducted by Toluna Analytics, “43% of those who were aware of narcolepsy believed that patients with narcolepsy often fall down because they lose consciousness while walking or standing” (Mattina, 2019). While cataplexy does cause muscle weakness and may cause individuals affected to fall or lose balance, they are completely awake and conscious instead of asleep (Lee, 2020). It is also more common for the cataplexy to affect certain areas of the body rather than cause a collapse (Mattina, 2019). This aligns with the fact that many of these individuals learned of the disorder through television and movies. The study discovered that “of those who reported they had heard of narcolepsy, 35% said they had heard about it from television shows and 24% from movies.” (Mattina, 2019).
Another distorted portrayal of narcolepsy that leads to misconception is the stark lack of portrayal of children and young adults with narcolepsy. Of the characters with narcolepsy in movies and TV shows, the large majority of them are adults (IMDB, n.d.). In reality, about 1 in every 100,000 children has narcolepsy, and symptoms can manifest as early as age five or six (Cleveland Clinic, n.d.). Unfortunately, official diagnosis is delayed and does not occur until years later, at an average of “15 years after the onset of symptoms” (Narcolepsy Network, n.d.). In addition, because of the fact that symptoms of narcolepsy present differently in children (sudden weight gain, early onset puberty, automatic behavior such as several seconds of falling asleep before continuing regular tasks with no memory of the occurrence), children with narcolepsy are also often misdiagnosed with other conditions like attention-deficit/hyperactivity disorder (ADHD), epilepsy, and depression (Spear, 2018). The child may also be seen as lazy and clumsy (Spear, 2018).
Narcolepsy is a largely misunderstood disorder. Part of this is due to media representation, and one study found that “84 percent of physicians and 74 percent of people living with narcolepsy” agree (Thorpy, n.d.). Symptoms often go ignored and continue to affect daily activities. Narcolepsy goes beyond someone taking a lot of naps or someone collapsing into sleep in the middle of a conversation. Misrepresentation in the media could lead to the delay in recognition and subsequent treatment for people living with narcolepsy, further perpetuating myths. Despite this, with increased education and correct representation there can be a future where people with narcolepsy can receive diagnosis and treatment better than ever before.
References
Bernandi , B., Ganis, S. (Producers), & Mitchell, M., V .(Director) . (1999). Deuce Bigalow: Male Gigolo [Film]. Retrieved from https://www.amazon.com
Cleveland Clinic. Narcolepsy in Children (n.d.). Retrieved September 26, 2020, from https://my.clevelandclinic.org/health/diseases/14307-narcolepsy-in-children
IMDB. Most Popular Narcolepsy Movies and TV Shows (n.d.). Retrieved September 26, 2020, from https://www.imdb.com/search/keyword/?keywords=narcolepsy
Lee, K. (2020, August 12). What is cataplexy? Symptoms, causes, diagnosis, treatment, and prevention. Everyday Health. https://www.everydayhealth.com/cataplexy/guide/
Mattina, C. (2019, August 12). Pediatric narcolepsy symptoms differ from those of adults, review finds. AJMC. https://www.ajmc.com/view/pediatric-narcolepsy-symptoms-differ-from-those-of-adults-review-finds
Mattina, C. (2019, September 19). Survey finds widespread misconceptions about sleep disorders. AJMC. https://www.ajmc.com/view/survey-finds-widespread-misconceptions-about-sleep-disorders
Narcolepsy Network. Narcolepsy Fast Facts(n.d.). Retrieved September 26, 2020, from https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts/
National Institute of Neurological Disorders and Stroke. Narcolepsy Fact Sheet (n.d.). Retrieved September 24, 2020, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
National Organization for Rare Disorders. Narcolepsy (n.d.). Retrieved September 26, 2020, from https://rarediseases.org/rare-diseases/narcolepsy/
Spear, L. (2018, December 10). Narcolepsy Can Look Different in Kids Than It Does in Adults. Sleep Review Magazine. https://www.sleepreviewmag.com/sleep-disorders/hypersomnias/narcolepsy/narcolepsy-kids/
Thorpy, M. New survey sheds light on the impact of narcolepsy (n.d.). STAT. Retrieved September 27, 2020, from https://www.statnews.com/sponsor/2018/11/26/new-survey-sheds-light-on-the-impact-of-narcolepsy/
