Adolescents with narcolepsy face a unique set of challenges as they navigate the typical social relationships of their age group while managing their chronic sleep disorder. In addition to experiencing excessive daytime sleepiness and other sleep-related symptoms, these adolescents are forced to balance school, extracurricular activities, and social engagements while also managing their condition. This balancing act can create social, emotional, and psychological stress in the lives of these young people. In this article, we will explore the challenges faced by adolescents with narcolepsy as they navigate their social relationships and offer some strategies for managing those challenges.
Adolescents with symptoms of narcolepsy may experience significant effects on their social health during a critical developmental period. Narcolepsy is a neurological disorder characterized by excessive daytime sleepiness (EDS) and cataplexy—an unexpected loss of muscle tone—that can have a profound impact on an individual’s social life. Despite this, little research has been conducted on the social challenges faced by patients with narcolepsy.
Recently, a few studies have been published that assess the impact of narcolepsy on the social relationships of adolescents, including friendships and romantic relationships. One study by Zhou et al identified an overarching theme that adolescents and their parents experience difficulty in trying to balance narcolepsy symptom management with meaningful social engagement. The study also found that individuals with narcolepsy are at higher risk for social isolation, leading to decreased opportunities to socialize, establish relationships, and even engage in intimacy. During the act of intimacy, some may experience sleep attacks or cataplexy, which can compromise the intimate experience.
In a recent interview with NeurologyLive, Anne Marie Morse, DO, a pediatric neurologist and sleep medicine specialist at Geisinger Medical Center, discussed the challenges faced by adolescents with narcolepsy and their impact on their social health. Dr. Morse emphasized the importance of understanding and addressing the priorities of the teens with narcolepsy, acknowledging and validating social limitations, and encouraging social support. Providers should include these factors as part of the areas to measure the impact of current treatment.
While individuals with narcolepsy may struggle to prioritize social relationships, advocacy groups for individuals with narcolepsy are incredibly active and continue to raise awareness and demand for the field of sleep medicine to improve on the delivery of care and prescribe social support as a measure of therapeutic intervention. At this time, clinicians appear to be disconnected from the social and sexual health of young adults with narcolepsy, despite individuals demonstrating that it is a problem they would welcome inquiry and guidance on. Dr. Morse calls for a personalized approach to treatment goals that go beyond the evaluation and measure of EDS and cataplexy and encompass the reported disability, including social, sexual, work, academic, and driving spheres.
To improve the social health of adolescents with narcolepsy, providers should address the priorities of the patient’s care, acknowledge the limitations caused by narcolepsy, encourage social support, and personalize treatment goals. A multidimensional approach to management that may include medication, social support, education, psychology, and day or sleep structure can be used to improve the social and sexual health of young adults with narcolepsy. Awareness of the social challenges faced by individuals with narcolepsy is necessary for providers to provide comprehensive care and support for these patients during their critical developmental period.
