While it affects each person differently, narcolepsy is a life-long condition. Studies have shown that narcolepsy has a substantial personal and economic burden for those living with the disorder. The main goal for people with narcolepsy is to manage their symptoms and live a normal life as much as possible.
By learning about how narcolepsy affects an individual’s life, parents, partners, friends, teachers, and coworkers can have a better understanding of how they cope with narcolepsy. They will also be better equipped to offer support and help reduce the stigmas associated with narcolepsy.
Living with Narcolepsy can affect almost every part of an individual’s life, from school to work to their personal and social lives.
On a daily basis, people with narcolepsy may struggle with:
People with narcolepsy are also more likely to have other conditions, including obesity, depression, anxiety, and other sleep disorders.
Studies on narcolepsy explain the damaging impacts of symptoms and stigmas on an individual’s quality of life and psychosocial well-being.
People with narcolepsy report that they are not able to perform at work or school as well as they would like because of their narcolepsy symptoms.
Children and teens with narcolepsy have been shown to be at a higher risk for depression, social and emotional distress, aggressive behaviour and difficulty with focus and attention. This can often affect their performance at school.
Students with narcolepsy are also often socially isolated, which can lead to alienation, depression, and other psychological problems. They can find school frustrating because narcolepsy makes it hard to stay alert in class and focus during tests.
People with narcolepsy strain to stay awake during social activities such as watching a movie with friends. They can also experience a cataplexy episode, which is the sudden loss of muscle tone at awkward times, such as when laughing with friends at a party. They may need to take a nap several times during the day. They may even try to exert some form of control over their own emotions to regulate them, in order to avoid a cataplexy episode at any cost.
They report feeling socially isolated, inferior to others, and hesitant to disclose their disorder to others because they fear the consequences and reaction they may receive.
While narcolepsy poses significant and burdensome challenges to a person’s daily life, it is a manageable condition and people with narcolepsy can lead fulfilling lives.
For teens, some of the research recommends increased psychosocial support from mental health professionals, educational resources for schools and teachers, and peer support groups for adolescent narcolepsy patients.
Teachers can also make accommodations for students with narcolepsy to have one or more brief scheduled naps within the school day if needed and to take a brief nap after school. Career counselling is also suggested for teens with both types of narcolepsy.
People with narcolepsy may also find it helpful to educate friends, family, and colleagues so they can work together to help manage the impacts on their daily lives. It may also be useful to communicate with others and ask for support. This may also help clear misunderstandings about sleepiness and cataplexy episodes when they occur. It is also important to maintain social flexibility with friends and family. Seeking support and finding resources, tools and support groups has also been found to be invaluable.
find ResourcesNarcolepsy is a lifelong condition and managing the day to day symptoms can be challenging. Many people with narcolepsy can make lifestyle changes to help cope.
These include:
Scheduling short naps throughout the day can be helpful.
20 minutes of exercise 4 to 5 hours before going to sleep can help with your circadian rhythms. Be mindful of being too active in the hours before bedtime.
Talking openly about your narcolepsy signs and symptoms, but most importantly about your coping strategies and your needs to manage them can be helpful.
There are resources available in Canada to help you and your loved ones living with narcolepsy.
