When Medicine Sleeps on Patient Voices

When you notice someone falling asleep where they shouldn’t, what impression does it leave? You could probably understand a student dozing off in class, an office worker dozing off in front of a static computer, or a sleepy commuter at the fresh crack of dawn. But have you ever fallen asleep while walking, doing manual labor, or grocery shopping after a full night’s rest? 

Stigma surrounding daytime sleep and sleepiness is well-documented, and perhaps you have been subjected to or harbored views that perpetuate this stigma. In many cultural contexts, sleepiness is associated with laziness. People who deal with sleep disorders report facing discrimination arising from appearing exhausted, changes in behavior and cognitive function, and assumptions that they are self-neglecting, antisocial, or faking their fatigue. In his book, Sleepyhead, Henry Nicholls shares his experience as one of many slept-on stories with sleep disorders, and outlines how stigmas around sleep deficiency have impaired progress in somnology in Western medicine.

Nicholls’ work is impactful upon any reader regardless of the state of their sleep-wake cycle. Most apparently, he writes for people who suspect themselves to be sleep disorder patients like himself. When he reached his early 20s, he began suffering from emerging symptoms of narcolepsy, which is mainly characterized by excessive daytime sleepiness, that eroded his social, psychological, and physical health. You may recognize narcolepsy as the inverse of insomnia, which is characterized by an inability to get adequate sleep. We in fact learn how fortunate he is to have received a narcolepsy diagnosis within a year. In a humorous, yet empathetic and destigmatizing way, he provides numerous stories from patients whose youthhoods are sedated by sleep irregularities that go undiagnosed and untreated for decades. The most indismissable, debilitating sleep disorder symptoms have been chalked up to stress, child development, menstruation, and other poor explanations that reflect a near desert of training on sleep disorders in medical education. The book provides insight into past and present resources for lives tossed and turned by their sleep-wake cycle.

“The longest recorded wait from onset of symptoms to diagnosis is a remarkable 67 years”

(Nicholls, 2018)

However, I also highly recommend Sleepyhead to other folks Nicholls is thoughtful of: if you sleep just fine, or share the notion that skimping on a few hours of sleep each night can’t be that consequential (fellow students, you know who you are) this book is certainly still a worthwhile read. It’s astonishing how the profound evidence it discusses for sleep and public health issues that end up in urgent care is tucked into the shadows. But Nicholls provides interesting ways for healthy and disorder-affected sleepers to not just improve the amount of sleep you get, but also to achieve that deep, undisturbed, high-quality sleep. A few of the simpler tricks have produced surprising results for me without compromising other things I’ve struggled to balance with sleep. Why not explore what may be happening in your brain and body in that unconscious, fleeting stretch of time, or during those otherworldly dreams, in the state in which you spend a third of your life? 

The book also does an incredible job scoping out current research on the neurophysiology behind sleep disorders, especially during the misunderstood states perched between sleep and waking. This includes sleepwalking, sleep paralysis, and when squirrels “play dead”. Nicholls repackages originally technical descriptions into humorous, lay explanations accessible to any reader. Among them, neuroscience nerds are presented with a wealth of rabbit holes to dive into from the catalog of spearheader researchers he interviews. 

Most importantly, I want to emphasize how Sleepyhead is an excellent opportunity to appreciate the need for narrative medicine in sharing knowledge between patients and their loved ones, and improving healthcare. When patient experiences like Nicholls’ around sleep disturbances are heard rather than dismissed, they set effective alarms that awaken us to the need for more robust interventions and healthcare for sleep disorders.

By Christina Zeng (she/her) | Blog Committee Member

References:

He, S., Ke, X. J., Wu, Y., Kong, X. Y., Wang, Y., Sun, H. Q., Xia, D. Z., & Chen, G. H. (2022). The stigma of patients with chronic insomnia: a clinical study. BMC psychiatry, 22(1), 449. https://doi.org/10.1186/s12888-022-04091-y

Luca, G., Haba-Rubio, J., Dauvilliers, Y., Lammers, G. J., Overeem, S., Donjacour, C. E., Mayer, G., Javidi, S., Iranzo, A., Santamaria, J., Peraita-Adrados, R., Hor, H., Kutalik, Z., Plazzi, G., Poli, F., Pizza, F., Arnulf, I., Lecendreux, M., Bassetti, C., Mathis, J., … European Narcolepsy Network (2013). Clinical, polysomnographic and genome-wide association analyses of narcolepsy with cataplexy: a European Narcolepsy Network study. Journal of sleep research, 22(5), 482–495. https://doi.org/10.1111/jsr.12044

Nicholls, H. (2018). Sleepyhead. Hachette Book Group.

Nwanaji-Enwerem, U., Condon, E. M., Conley, S., Wang, K., Iheanacho, T., & Redeker, N. S. (2022). Adapting the Health Stigma and Discrimination Framework to understand the association between stigma and sleep deficiency: A systematic review. Sleep health, 8(3), 334–345. https://doi.org/10.1016/j.sleh.2022.03.004