8 Ways Caregivers and Friends Can Support People with Narcolepsy

To all of the friends and families of people who have narcolepsy or symptoms of narcolepsy: LISTEN UP!

In case you weren’t aware, narcolepsy is a serious and chronic, yet rare condition that affects just one in 30,000 Americans; although, it’s estimated that thousands remain undiagnosed. This seemingly mysterious disease affects sleep-wake cycles—so much so that individuals experience extreme daytime sleepiness along with unpredictable falling asleep episodes.

Because of their inability to have a restful night’s sleep, patients can experience hallucinations, alarming or vivid dreams, concentration, and memory issues, just to name a few. With all of these challenges, it’s no wonder that people who suffer from narcolepsy face employment, marital, and parental problems.

The good news is it’s treatable; the side effects of prescribed medications are manageable, too. Often, though, patients who haven’t received a proper diagnosis or refuse to be under the care of their doctors bear the brunt of cruel jokes; people think they’re lazy sloths, party animals, workaholics, or not the sharpest knife in the “knife box” when it comes to intelligence. And all too frequently, they feel humiliated and shamed.

News Flash: Narcolepsy does not discriminate who it affects, nor is it anyone’s fault!

So, now is the time to educate ourselves and bring out the big guns of compassion. Let’s offer inspiration and support to everyone in the narcolepsy community!

Here are 8 easy ways you can help your loved one:

  1. Educate yourself about narcolepsy.
  2. Ask if they need help—offer it, but don’t hover.
  3. Offer to help organize tasks, such as paying bills and household chores.
  4. Use sticky notes around the house and log important appointments in a calendar.
  5. Offer to run errands or drive kids to and from school on occasion.
  6. Deliver a yummy meal every now and then and include healthy snacks.
  7. Watch a movie together at home and or do something that brings joy to their life and yours.
  8. Give your loved one a pat on the back even for the little things in life. Praise–no matter how large or small–goes a long way.

To learn more about what it’s like to live with narcolepsy, check out: A Day in My Shoes Narcolepsy Community blog by Cherae, whose inspirational story of living with narcolepsy is absolutely AMAZING!

To educate yourself about narcolepsy, check out these resources as well:

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

http://rarediseases.org/rare-diseases/narcolepsy/