The sleep and dream specialist at the University of Arizona’s Center for Integrative Medicine explains why providers should recognize the psychological dimensions of this sleep disorder.
Ask most sleep specialists about narcolepsy and they’ll give you the facts: It’s a chronic neurological condition typically linked to genetically mediated autoimmune damage to orexin/hypocretin cells. They’ll add that it is characterized by excessive daytime sleepiness (EDS), disordered REM sleep, insomnia, cataplexy, sleep paralysis (SP), and hypnagogic hallucinations (HH), and that it requires careful medical management.
Ask people with narcolepsy (PWN) about narcolepsy and, well, they’ll likely say something similar. But encourage them to elaborate, to say something about their experience of narcolepsy, and you’ll be whisked from clinical facts to phenomenology. To a strange world of compelling sleep, precipitous paralysis, and intense dreaming.
They might also share their experiences of nonordinary states of consciousness, ranging from the horrifying to magical. Many PWN enter multidimensional realities similar to those depicted in the movie The Matrix, where they have encounters with a range of entities from incubi to angels. They might describe expansive dreams that feel more real than reality. And they’ll talk about feeling excluded from the rhythms of normal life—about social rejection, isolation, and shame.1
Flores et al found substantial economic and humanistic burdens associated with narcolepsy.2 Compared with matched controls, PWN reported higher rates of psychiatric comorbidities, reduced quality of life, greater loss of productivity, and greater utilization of healthcare resources. She concluded, “The large adverse impact of narcolepsy observed in this study suggests high unmet needs in this population.”
I have long been an advocate of an integrative medicine3 approach to narcolepsy—one that brings effective conventional therapies together with complementary and alternative medicine. An integrative approach utilizes nutrition, exercise, phototherapy, and various body-mind techniques to help manage narcolepsy. It emphasizes the critical role of mind—of behavioral and psychological factors and the personal experiences of patients.
Sir William Osler’s admonition—“it is much more important to know what sort of a patient has a disease than what sort of a disease a patient has”—is most relevant in treating PWN. Medical anthropologists have long stressed the value of distinguishing disease (objective measures of sickness) from illness (the subjective experience of being sick).4 Too often, the former overshadows the latter, obscuring the critical role of psychology in healthcare and resulting in an overly medicalized approach to treatment.5 This is especially true for complex and challenging conditions like narcolepsy.
My work with PWN has taught me that their sense of illness critically impacts their quality of life, response to their disease, and treatment adherence. Some patients view narcolepsy as a curse. They may feel afflicted, victimized, debilitated, disabled, and hopeless. Although terribly challenged, others may view their condition in terms of possibilities and unique opportunities. Even in cases with severe symptoms, some PWN view themselves not as disabled but as other abled, deriving rich meaning from their extraordinary challenges.6
The idea that serious health challenges can inspire personal growth is not new. We sometimes see this in response to cancer, addiction, spinal injury, and other conditions, where patients open to new personal, relational, vocational, artistic, or spiritual possibilities. Some PWN use their vivid dreams in support of artistic endeavors in music, dance, writing, and painting. Others find their dreams can serve as portals to deeply personal spiritual experiences.
I first became interested in the personal stories of PWN a couple of decades ago when I encountered a young woman with moderate symptoms of narcolepsy who had not yet been diagnosed. She had made a number of personal adaptations to accommodate her EDS, SP, and HH. A successful business professional and mother of two, she came to see me with questions about dream interpretation. Without awareness of it, her approach to her dream life was reminiscent of shamanic practices. She felt her dreams, both good and bad, were a portal to an expansive spiritual realm. Here was someone with significant disease but virtually no illness.
In recent years, the emergence of cognitive behavior therapy for narcolepsy, or CBT-N, is opening new avenues for helping PWN understand and manage illness. CBT-N refers to a range of psychotherapeutic techniques that include cognitive therapy, sleep satiation, systematic desensitization, stimulus control, imagery rehearsal therapy, scheduled naps, hypnosis, lucid dreaming, and various relaxation practices. Ongoing research suggests that CBT-N can provide an essential complement to medical treatment for PWN.7
Based on anecdotal experience, I believe the repertoire of CBT-N interventions could be further expanded to include NIA (neuromuscular integrative action), yoga and pranayama (yogic breathing exercises to help modulate energy), mindfulness training to manage cataplexy, expressive arts therapy, somatic therapies, dream work, and social support groups. Social support programs like those offered by the Narcolepsy Network provide an invaluable complement to conventional medical care.8
Behavioral sleep medicine specialists and psychotherapists who might be deterred from working with PWN by viewing narcolepsy as a strictly medical condition need to recognize the critical psychological or illness dimension of this condition and be encouraged to become more involved. And research in behavioral sleep medicine and CBT-I should expand its purview wherever possible to include PWN.
Rubin Naiman, PhD, is the sleep and dream specialist at the University of Arizona Center for Integrative Medicine. The Center for Integrative Medicine offers a number of local and distance learning training options for medical, mental health, and other allied health professionals. These include residency programs, a 2-year fellowship training, certificate programs, and a broad range of courses in integrative medicine. For additional information, visit www.integrativemedicine.arizona.edu.
1. Culbertson H, Bruck D. Narcolepsy and disruption to social functioning. E-J Appl Psychol. 2005;1(1):14–22. doi: 10.7790/ejap.v1i1.5.
2. Flores NM, Villa KF, Black J, Chervin RD, Witt EA. The humanistic and economic burden of narcolepsy. J Clin Sleep Med. 2016;12(3):401-407.
3. Rakel D, Weil A. Philosophy of integrative medicine. In: Rakel D, ed. Integrative Medicine. 3rd ed. Elsevier; 2012.
4. Helman CG. Disease versus illness in general practice. J R Coll Gen Pract. 1981;31:548-552.
5. Green AR, Carrillo JE, Betancourt JR. Why the disease-based model of medicine fails our patients. West J Med. 2002;176(2):141-3.
6. Naiman R. Narcolepsy, what we all should know. Huffington Post. October 7, 2012. www.huffingtonpost.com/rubin-naiman-phd/narcolepsy_b_1730627.html
7. Agudelo HAM, Correa UJ, Sierra JC, Pandi-Perumal SR, Schenck CH. Cognitive behavioral treatment for narcolepsy: can it complement pharmacotherapy? Sleep Science 7 (2014) 30-42. Elsevier.