Community Views: Parenting With Narcolepsy
Last updated: August 2023
We recently asked our Facebook community, "Are there any parents in the community that can share how they manage parenting and living with narcolepsy?"
Here's what community members shared to help other parents with narcolepsy.
A few stories from parents with narcolepsy
Not a bad mom
"I found out I’m narcoleptic 2 weeks before my 37th birthday. My kids [were] 8 and 6 at the time of diagnosis. I cried my first day on medication, because I finally understood I wasn’t a bad mom — I was just tired!
I wish I’d known before I had kids. Like most people with narcolepsy, I have to have a routine. My worst days are caused when I’m abruptly woken up in the middle of the night.
Unfortunately, my partner called me lazy for years. I thought I was depressed. He’s been better, but still does not understand."
Being a listening ear
"It is definitely a struggle. One thing that works well for me is having a routine with built-in 1-on-1 time with my teenage son and preteen daughter. I may not be up for much, but I listen to them, and we hang out.
My daughter's favorite thing is something I made up called a 'bed picnic.' It's where we order food delivery and set it up like a picnic on my bed."
Self-care is productive
"It’s a challenge, especially not being able to be on certain medications when pregnant or breastfeeding. I think it is key to know your limits and prioritize rest when you need it (easier said than done). Try to remember that rest and taking care of yourself is productive."
Other advice from parents with narcolepsy
Parents who live with narcolepsy have found many other strategies for caring for their kids alongside managing their narcolepsy symptoms. Here are a few more:
I partnered with another parent
"I did not do it very well. I partnered with another parent. My most difficult time of day was after-school hours. She picked up all our kids, took them home for a snack and activity time, then brought mine home. Then we did homework, etc. I do not know what we [would] have done without her.
On the days she was unable to do this, I had a really difficult time. I finally hired a childcare person to come in for a couple of hours to supervise. During those times I would nap. When not possible, it was not a good time... for any of us."
I nap during the day
"When mine were toddlers, they were trained to sit on top of me (on my stomach, back, or hip, depending on how I was laying) when I needed to nap and watch a movie. If they moved it would wake me up. Now that they’re older, them being in school makes it so much easier, because I nap during the day."
I did what I had to do to get through
"I had my 3 kids age 6 to 10 for 2½ years. I worked full-time and came home to care for my kids. I am a lousy cook and not a great housekeeper. I did what I had to do to get through and keep the kids at home and happy.
I married a wonderful woman who cared for all of us. Life was so much better to have someone who got us through. We were married for 37½ years, and I miss her with all my heart."
Give yourself grace
"Give yourself grace. My kids and husband know I need a nap every day. They are pretty good at leaving me alone for 60 to 90 minutes every afternoon. It makes all the difference."
Are you parenting with narcolepsy?
Are you a parent living with narcolepsy? What advice would you give, or what stories would you share, with other people parenting with narcolepsy? Share with us in the box below.
Did you know you can read advice and stories from other community members in our new Community Hub?