There are many challenges to living with narcolepsy. It can take 10 years or more for a person to be diagnosed with narcolepsy. During that time, narcolepsy’s most common symptoms, excessive daytime sleepiness and cataplexy, can make work, school, and relationships difficult.1
Quality of life plummets as other people confuse sleepiness for laziness, and doctors confuse cataplexy for epilepsy or other illness. The obesity that often comes with narcolepsy may be mistaken for lack of willpower or poor eating habits. Self-esteem can take a beating.
Adding to these issues, people with narcolepsy have higher rates of depression, anxiety, attention deficit hyperactivity disorder (ADHD), bipolar disorder, and schizophrenia. Doctors do not know why these conditions are more common in people with narcolepsy. It may have to do with how the brain processes hypocretin, a brain hormone. In children, narcolepsy is tied to higher rates of aggression, ADHD, social and emotional problems, and lower school performance.1-4
Living better with narcolepsy
Despite the hardships, people living with narcolepsy can take many steps to improve their mental health.3,5
Know yourself
Over time, you can learn what makes your narcolepsy worse, or better. You may need to experiment with when to take the meds that keep you awake, or stay asleep, so that you function well at school or work. You may need to leave yourself notes to fight any mental fogginess. Other people learn to avoid things that trigger their cataplexy. This self-awareness can be the first step in taking control of your symptoms.
Good sleep habits
A combination of well-timed daytime naps and good sleep habits at night can make you less sleepy and more productive during the day. This can make you feel more accomplished, and reduce the stigma that impacts your self-esteem.
Exercise
Regular exercise can help improve your mood, control your weight, and reduce the health issues that come with carrying too many pounds, including depression. Regular exercise also helps you sleep better at night, and restful sleep also improves mood.
Take your medicine
Taking your narcolepsy drugs exactly as prescribed can help reduce your symptoms. In particular, some antidepressants will treat your depression and cataplexy at the same time. And, if a medicine seems to stop working, talk with your doctor right away about changing your drug regimen.
Increase social connections
People with narcolepsy sometimes isolate themselves at home because they are afraid of having an episode in public. This is a reasonable fear but isolation can make depression worse. Try to break the isolation by connecting with others online, through a hobby, sports, or volunteer work.
Find a narcolepsy support group
Connecting with people who understand exactly what you are going through can be a valuable source of support. Support groups take place in person and online.
Educate yourself
The more you understand about your condition, the more you can advocate for yourself and educate others. Consider attending a conference to learn about the latest narcolepsy treatments and research.
Educate those around you
The more your family, teachers, coworkers, and friends know about narcolepsy, the more likely they will be to react with compassion when you need it. Talk to others about why you need naps. Tell them how they can best support you and keep you safe if you fall asleep unexpectedly or if an episode of cataplexy occurs. Let them know that you may have hallucinations during a conversation or seem confused or grumpy when you wake up.
Stay flexible
Tell people ahead of time that any plans may have to change at the last minute, and explain why. You do not want to push yourself to stay awake if you need a nap before driving or before an important meeting. Naps may be inconvenient at times but are a necessary part of your life.
Get regular screenings
Because depression is so common, people with narcolepsy should be screened for depression once a year. If you snore, tell your doctor so you can be screened for sleep apnea. Sleep apnea is common in people with narcolepsy and can make depression worse, along with other health issues.
Know your limitations
Other people may not realize why you avoid driving in the evening or that you cannot stay up really late. Allow yourself to do enjoyable things that fit with your limitations. Ask to meet earlier instead of agreeing to a late dinner. You have plenty of options that allow you to have fun without putting yourself at risk.