Community Perspectives: Narcolepsy in Love, Life, and Relationships

By Narcolepsy Team

2 min read

It's no secret in this community that living with narcolepsy and maintaining relationships at the same time can come with unique challenges.

Many people often associate the month of February with Valentine's Day and romantic connections. But the ideas of "love" and "relationships" are so much more than that.

We've gathered together stories, advice, and support from our community members and our Community Health Leaders to celebrate love in all its forms. Read the following poignant and heartwarming insights by clicking the blue buttons labelled "Read the full story," and share your own experiences with love and relationships by voting in the polls at the bottom of the article!

Marriage, family, and parenting

Building and maintaining healthy and happy relationships isn't limited to dating or romance! Community members and Health Leaders have shared what it's like to try to foster relationships with family members and close friends, too. Here are a few stories and pieces of advice they've shared:

Flybum4: "My 16-year-old daughter was struggling tremendously over the past 2 years. And as I watched her, it hit me really hard one day what I was seeing."

Lindsey Kizer: "I did not receive my narcolepsy diagnosis until about year after I took my vows with my husband. At the time, neither of us knew the health journey we would take just after we celebrated our first wedding anniversary."

Community members who are parents and caring for children while managing their narcolepsy have also shared their stories with us.

"I cried my first day on medication because I finally understood I wasn’t a bad mom — I was just tired!"

"Give yourself grace. My kids and husband know I need a nap every day."

Dating with narcolepsy and hypersomnia

We once asked our Facebook community, "What tips do you have for dating with narcolepsy?" Here are a few of the answers you shared:

"Find someone who is accepting."

"Date another person with narcolepsy. I'm doing it. It's worked great for 4 years."

"Think outside the box and don't put too much stock in movie dates."

"I feel it'd be similar to how I have my friends. They are 100 percent understanding and supportive. If I'm dozing off they ask if I need to take a nap. And if I say I am gonna go lay down and take a nap, they are 100 percent fine with me taking as little or long of a nap as I need. Even when I'm hanging one on one with a person. So, I think if I had a partner who was supportive to that degree, that'd be the best."

A few of our Community Health Leaders have written about dating with narcolepsy, too. Check out their stories and advice below!

Tatiana Corbitt: "There are a variety of strategies I use when dating with narcolepsy that help me advocate for myself while also appropriately tending to new relationships."

Lauryn Craine: "Overall, dating over these last 4 years has been a mess. But I'm still hopeful I'll find someone who likes taking naps with me."

Kerly Joy Bwoga: "Dating someone with narcolepsy can bring unique challenges, but with understanding, communication, and empathy, you can build a strong and fulfilling relationship."

How do you maintain relationships with narcolepsy?

Share your experience in our community polls below, and leave a comment to tell us more!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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TinaJ Member
No label..well, maybe I just don't want another one.😉 Yes, all except low D and sodium(both corrected) I keep a close watch on my labs and take supplements. Thank you!!
TinaJ Member
A pot of coffee a day and still sleepy!! Although I've never been diagnosed, my life would tell me otherwise. I thought of doing sleep studies but never got around to it. I've always taken naps as an adult. At work, I would nap every day at lunch hour. If I missed a nap? I'd get so sleepy it was hard to stay awake in the afternoon!! Awful. I rarely missed a nap and if someone was in the ladies bathroom couch, I'd go to my car. I remember drinking 14 cups of coffee (at least) a day at work and the more I drank, the sleeper I got but I couldn't stop.. I felt guilty and always chipped in money for it. Trips? McDonald's coffee. One time on a long trip to visit my parents, I took No-Doz. I finished the bottle and by the time I made my destination, my face had a RASH on it. Thank God my parents didn't notice!! I sleep SOUND. I rarely ever wake up unless my hip or ear hurts from pressure. I am a bear about my sleep and my naps. I have to have at least 2 hours a day nap before dinner. Sometimes less, sometimes more. Under stress I need more. It has never affected anyone because I never understood it and just DRANK MORE COFFEE!! It was hard when my children came along and had visits to theme parks because I was TIRED..Without access to a nap or more, yes, COFFEE I was sure to have to fight the sleepiness I felt. Today, I am sleepy of course. I get at least 9 to 10 hours of sleep a night plus 2 hour except naps a day except when I have grocery in town or appointments. I feel I am sleeping my life away since half if it is sleeping. When you are older as I am, it seems like people understand the nap thing. When I was younger, it was a demand of mine when I had others (husband, babies) in my home to contend with. At work, I was basically on my feet for hours and that helped, being upright. But sit down? I fell asleep once on the job oh, twice. Oops. Was caught once. That supervisor was glad I left his shift because he didn't turn me in. I never forgot that. I have other stories but for now, in my advancing age I feel I could sleep 24/7. Always have as an adult. Giving up coffee has given me severe migraines so no, that isn't an option. Besides, I love it. Only time I ever felt better was on the Bragg diet. But its basically being a bunny rabbit. I do wish I'd continued but my husband at the time wasn't supportive. So, back to everything foods! Now, I have no one to answer to but I still prefer human to bunny. Helped with cholesterol too!! And of course, a POT to the heaping brim of COFFEE!!
1. Lori.Foster Community Admin
 Hi <inline-mention username="TinaJ" user-id="4596760"/>. How wonderful that you advocated for yourself all those years and took naps when you needed them. Have you considered getting an evaluation now or are you content with no label given that you have developed so many coping skills? Has your primary care doctor ruled out other potential causes, such as thyroid disorders and nutritional deficiencies? Thinking of you and wishing you the very best. - Lori (Team Member)