“It's about being open with people and asking for help when I need it.”– Katie
Tips for Living With Narcolepsy
People living with narcolepsy share their experiences.
See what others living with narcolepsy say has helped them in managing day to day, preparing for visits with their healthcare providers, and building out their support network.
Managing Day to Day
- You have to find what works for you. Be intentional in your approach. – Andre
- Keep a consistent sleep schedule. – Sean
- Practice mindfulness or yoga to reduce stress. – Leah
- Schedule naps during the day. – Matt
- Avoid screen time before bed. – Katie
Preparing for an Appointment
- Be an advocate for yourself. – Leah
- Make a list of questions and/or concerns before your visit. – Katie
- Bring someone to your appointment who can help advocate or remind you of what you wanted to say. – Sean
- A spouse or close friend may also recognize symptoms (for example, partial cataplexy) that people living with narcolepsy have not noticed themselves.
- Track your symptoms. – Ijeoma
- Tell your healthcare provider about anything unusual that you experience, even if you do not suspect it is a symptom. Some potential symptoms of narcolepsy may not be obviously associated with the disorder.
Finding Your Support Network
- Find the right sleep specialist. – Scott
- Connect with people who have been diagnosed, either online or in person. – Sharon
- Having narcolepsy can leave you feeling self-conscious in the workplace. Strategic disclosure was better than allowing someone the opportunity to label me. – Ijeoma
- Being open and honest with your friends and family is incredibly important. – Emily
- Surround yourself with people who bring you peace. – Gina
- Find a counselor who you can speak candidly with. – Matt
Tips for Daily Living With Narcolepsy
Katie, Sharon, Ijeoma, & Leah
Hear tips for daily living with narcolepsy from people who have narcolepsy. From building a daily routine to practicing mindfulness, people living with narcolepsy share how they have learned to manage their symptoms day to day.
Communication is a two-way street. In order for me to get most out of my appointments, I have to put in the effort to make sure that I'm doing my part to communicate.
Matt, living with narcolepsy