- Narcolepsy can present challenges to daily living: in addition to sleepiness, people with narcolepsy may experience mental fogginess, poor memory, and hallucinations.
- Social life can be impacted when sleepiness and other symptoms disrupt conversations, social events, and plans for activities.
- These challenges can be managed by educating friends and family, communicating with others, maintaining social flexibility, and getting involved with narcolepsy support networks.
I think narcolepsy has been one of the things that has motivated me even more to succeed. I've got to utilize every single moment that I have awake!
Narcolepsy presents unique challenges that can affect many aspects of daily life. Even when medications are optimized, sleepiness, difficulties with attention, and cataplexy can affect the quality of interpersonal relationships and impact performance at school or work. In addition, full support from friends and family can be lacking, as many people do not understand narcolepsy or may have misconceptions about it.
The good news is that narcolepsy is a manageable condition, and nearly everyone with narcolepsy can lead a fulfilling life.
Personal and social impacts
Narcolepsy can affect many aspects of life, including an individual’s self-esteem, social relations, and quality of life.
People with narcolepsy may struggle with:
- Mental fogginess that makes it hard to concentrate
- Memory issues and automatic behavior that can lead to feelings of uncertainty about daily events and self-doubt
- Sleepiness that causes unintentional napping at school or work, which can be embarrassing and problematic
- Hallucinations around sleep, sleep paralysis, and cataplexy, all of which can be frightening and misunderstood
Narcolepsy can also impact social interactions. People living with narcolepsy may:
- Strain to stay awake during social activities such as watching a movie with friends
- Be confused or grumpy upon waking
- Need to take naps at inconvenient times
- Have hallucinations during conversations
- Experience cataplexy at awkward times, such as when laughing with friends at a party
Narcolepsy educator Lisa Rezza talks about the importance of advocacy.
People with narcolepsy and their friends and family can work together to help manage the impacts of narcolepsy on day-to-day living. (See At School and At Work to learn more about managing narcolepsy in those environments.) For someone with narcolepsy, it may help to:
- Develop self-awareness. Over time, most people with narcolepsy learn what aggravates their symptoms. This knowledge can help people manage their symptoms effectively. (For example, one might take a wake-promoting medication before commuting home, use a cataplexy-suppressing medication before a party, or schedule regular naps at times of day when sleepiness is most troublesome.)
- Educate friends and family. Friends, family, and others who are educated about narcolepsy and how it affects the person they know can react calmly and provide physical and emotional support when, for example, the need for an unplanned nap arises or an episode of cataplexy occurs. You can use a copy of What Is Narcolepsy? (PDF), and information on this website, to help educate family and friends.
- Communicate with others. It is especially important for people with narcolepsy to be able to communicate with others and ask for support, so that when symptoms do arise, friends and family can respond with compassion and care. Talking openly about sleepiness and cataplexy can help clear up misunderstandings before they occur. If a friend or family member has trouble understanding narcolepsy, inviting them to a doctor’s appointment, support group, or conference focused on narcolepsy can be extremely beneficial.
- Maintain social flexibility. For people with narcolepsy, it is essential that those with whom they interact are supportive and flexible with plans.
- Follow medication regimens. If a person with narcolepsy has been prescribed medications to help manage his or her condition, it is important that regimens be followed closely to ensure the most success in reducing symptoms throughout the day. See Medications for Narcolepsy (PDF)   for a summary of medications used to treat narcolepsy.
Many people with narcolepsy find it invaluable to educate themselves about the disorder as well as learn from others and share experiences. Websites, online forums, local support groups, and conferences are great places for people with narcolepsy, their partners, family, and friends to improve their understanding of narcolepsy, share tips, and find support. See Resources for a list of websites and organizations that provide more information about narcolepsy.
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