Dating with Narcolepsy: We’re Better In Bed

by julie on March 29, 2013

A mother of a 9-year-old girl with narcolepsy and cataplexy recently thanked me for my book and narcolepsy leadership, saying, “You give me hope that my little girl can grow up and have a good life. You prove that she can go to college and do great things… You prove she can even have a handsome good-looking boyfriend!”

I giggled and thanked her. Of course, I reported back to my boyfriend that his “good looks” were inspiring to young folks with narcolepsy. Too funny!

But in all seriousness, children and young adults are developing narcolepsy at an alarming rate, so dating with narcolepsy is an important issue to discuss, brought to my attention by a new UK blogger on the block – Crazy Narcolepsy. If you are a young person with narcolepsy, you might worry that your disorder will hinder your dating life. You may not want to talk about it with anyone – nevermind your crush. I understand.

If you’ve read my memoir, you know that my post-diagnosis love life has been rocky. I’ve had many bad first dates and a few long-term relationships. I’ve dated older guys, younger guys, a fellow lawyer with narcolepsy, a secret service agent, a professional chef, a commercial real-estate guru, and we’ll stop there.

But I’m here to tell you – it’s going to be okay. I believe narcolepsy helps to weed out the mis-matches quickly and lead us to the right person.

Disclosing narcolepsy on a date can be intimidating. Do you announce it right away? Wait untill it comes up in conversation? Hold off for the second or third date? Avoid the topic altogether?

I’ve tried all the the above and here’s what I’ve learned: presentation is everything. When I present my narcolepsy like “I have this terrible illness that I’m uncomfortable with” (either in my words or body-language), the recipient responds that yes, narcolepsy is terrible and uncomfortable to talk about.

Alternatively, when I present it like this, “I have narcolepsy, it’s a serious condition but I’m proud to have overcome so much adversity and now write a blog to help others…” Then the recipient generally agrees that it is something to be proud of.  I say “generally” because there are always outliers. 

A few years ago, my heart fluttered when a suave commercial real estate guru boldly asked me out at an art gallery event. A week later, we sat down for a romantic dinner at an Italian restaurant in Georgetown.

We were only at the bread basket stage when the conversation led me to disclose my narcolepsy. We were discussing careers and I explained, “I work as an independent copywriter but I’m also a narcolepsy spokesperson and was actually in Marie Claire Magazine last month. I’m writing a memoir about my journey with narcolepsy – from the beginning symptoms to ultimately running the Boston Marathon.”

I stopped there – proudly knowing I’d presented my narcolepsy better than ever before. I felt like a car salesman on the verge of making a big sale.

My date stared blankly and asked, “Is there anything else wrong with you I should know about now?”

Speechless, I fidgeted with my napkin in my lap and finally responded, “Wrong with me? – I said I’m a spokesperson for narcolepsy, writing a book and recently ran the Boston Marathon.”

He went on to boast (at length) about not having read an entire book since high school. By the time our entrees arrived, I tuned out. Maybe I was quick to give him the boot, but living with narcolepsy, I must prioritize my time carefully. I knew I would’ve rather gone yoga or taken a nice long evening nap than go on a second date with him, so I trusted my gut and moved on.

Over the next year and a half, I remained single. I fell in love with Zumba and worked diligently on my book and advocacy efforts. I’ve always hoped that if I just did my own thing, this would somehow attract me to the right person.

Ultimately, my narcolepsy brought me to my current boyfriend, Alex, a filmmaker and magazine editor who featured me as the cover story of his magazine last spring. We didn’t meet until months later, but when we did, it was straight out of a cheesy romantic comedy.

Alex has a natural respect for my narcolepsy, which I didn’t trust right away, because it seemed too good to be true. With time – he’s proven that he “gets it” and isn’t scared off. In fact, my adversity is part of what he admires the most about me.

He doesn’t take issue with my naps and often encourages me to take it easy. If anything, it’s my own self-guilt, stubbornness and fears that stir up drama occasionally, but we work through this. Alex even enthusiastically produces my professional narcolepsy awareness videos.

Major challenges will arise in everyone’s lives. For children and young adults with narcolepsy, these challenges come too soon. Peers may not be understanding right away. It’s not fair and it’s not easy, but it will get better. With time, you will meet people who see the very best in you and cheer you on. Great friends and partners are out there – I promise.

{ 26 comments… read them below or add one }

Julie Ann Funk March 29, 2013 at 4:14 pm

As always, so well-written, Julie! I, too, have found a wonderful man and partner in Evan, who is very understanding. Whenever one decides to disclose their narcolepsy to a potential mate, a friend, or anyone, the way you do it is the most important part. Their reaction will speak volumes to whether they deserve the right to your time and energy being spent on them. If they don’t, you should be happy to have found out so soon! <3

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Heather M. March 29, 2013 at 4:53 pm

Beautiful story. I sure hope he’s the One, because he sounds amazing! Best of luck to you both.

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julie April 1, 2013 at 4:59 pm

Thank you so much, Heather. I feel very lucky to have found Alex.

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julie March 29, 2013 at 8:15 pm

Thank you, Julie Ann! You got it right – lady, well said. And it was so wonderful to meet you and Evan in Dallas, TX! I could tell there was a whole lot of love and support and your relationship. It’s very inspiring.

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Mark Patterson March 30, 2013 at 12:40 am

Great article Julie! Your comments apply to anyone with a chronic condition. We all live with a degree of self-doubt, wondering whether we will be accepted and loved for who we are. Adding a chronic medical condition to the mix, especially one as misunderstood as narcolepsy, only adds to the level of concern. You are truly an inspiration for others and I applaud you for your willingness to openly talk about issues which often remain unspoken. I am also very happy that you met Alex; you two make a great team.

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julie April 1, 2013 at 5:02 pm

Dr. Patterson – you are so right. We all live with a degree of self-doubt and a chronic medical condition may make those fears stronger. I feel blessed to have worked through some of my own fears and insecurities to now be able to share my story openly. Thank you for your support, Julie

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sara gorman March 30, 2013 at 1:44 pm

Fabulous post, Julie!! Linking this to my website because so many can benefit from your perspective. my single lupus readers will love this! Thamks for the inspiring post!

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julie April 1, 2013 at 5:03 pm

Thank you Sara for linking from your site! I’m so glad this may be useful for single lupus readers too! Coming together and sharing our journeys makes us stronger. Your friend, Julie

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Gail Pean March 30, 2013 at 1:49 pm

Fabulous blog post Julie. I think everyone can relate to it and embrace it for their own concerns in dating. It goes back to you must love yourself and respect your own needs before some else will. Thank you again for sharing.

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Elaine Armstrong March 31, 2013 at 6:24 am

Hi Julie,
I just LOVE this post, I`m going to share it in my group. I`m sure it will be appreciated by all members but especially the teens and parents of children that are concerned about their childrens futures.
My husband(boyfriend at the time )got me to watch a tv programme with him about sleep disorders almost 18 years ago. I had been falling asleep in many inappropriate places while in his company. 10 years of attending doctors previous with no diagnoses had made me give up searching..so to speak..
When I think back now to the love and commitment shown that night when we discovered the word Narcolepsy for the 1st time. George organised that I attend a sleep specialist and it all went from there..18 years later he is still my Rock…he has such admiration for the work I do with raising Narcolepsy Awareness. Ever since our recent suddenly sleepy Saturday narcolepsy awareness event where he met with other members with Narcolepsy, he has been even more understand and supportive, which makes this ride a hell of a lot easier !
I can tell Julie that both you and Alex have that same relationship and I hope that in 18 years from now your relationship is as strong as George and mine, as I confident it will !!
Thank You again Julie, in been so open with sharing your life and helping others feel so comfortable about living with narcolepsy,

Happy Easter from Ireland,
Your friend,
Elaine xxx

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julie April 1, 2013 at 5:07 pm

Elaine – thank you for sharing your story of support!

I had no idea that your husband (boyfriend at the time) George helped you to find your diagnosis. This gives me chills. I’m inspired and elated to hear that you two are still together 18 years later. I’m so glad he was able to attend the Suddenly Sleepy Saturday event that you hosted in Ireland. You are amazing!

Thank you for sharing my post with your network. :-)

Your friend and cheerleader,
Julie

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julie April 1, 2013 at 5:04 pm

Gail – you’ve always seen the best in me and inspired me to be self-loving. You are a role model to me in so many ways. Thank you for your support, Julie

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Elaine Armstrong March 31, 2013 at 8:17 pm

Excuse me for posting my comment in Gail Pean’s reply section !

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julie April 1, 2013 at 4:58 pm

No worries, Elaine! :-)

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Makky's Mom April 1, 2013 at 2:21 am

Funny you write about this because of all my children, my (7 yr old) narcoleptic child is the one I worry about the least in terms of future relationship/marriage. I KNOW that the guys who are just out for a fun time won’t spend much time courting her, no matter how attractive she may be because they will find her need for naps and limited energy levels too restrictive. The man she will end up with WILL most certainly be kind, loving and accepting of whatever limitations she may have. I KNOW there is a very special person out there for her.

Julie, it sounds like your guy is your biggest fan! What a wonderful blessing! I’m very happy for you both.

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julie April 1, 2013 at 4:58 pm

Thank you so much, Makky’s Mom! I agree, she will find a loving and supportive partner, which is what we all deserve. With narcolepsy, I think this helps prioritize the right things in looking for a partner.

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Alex Withrow April 1, 2013 at 6:16 pm

I’m so proud of you, sweetie! Power couple, rockin’ and rollin’ :)

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julie April 1, 2013 at 8:28 pm

Thanks, Alex! I’m the luckiest… <3

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Emily April 1, 2013 at 6:26 pm

Great topic. The first date to whom I had to disclose my narcolepsy was the guy who was funny and charming enough to trigger my cataplexy. He ended up being funny and charming enough to marry as well. Before we were married, Sam realized he had to decide to love narcolepsy and cataplexy as much as he loved me. They’re just a part of the family, problems we deal with together. We try to look on the bright side of things and have realized that along with the hardship of shouldering a chronic sleep disorder come a lot of blessings as well. Sam couldn’t have been more supportive during our dating years and he continues to assume that role so gracefully, 7 years and 2 kids later.

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julie April 2, 2013 at 12:31 pm

Hi Emily, What an inspiring story! I’m so glad to hear that you and Sam have had such a supportive relationship with narcolepsy and cataplexy in the mix. Thank you for sharing your experience here so other PWNs know that they too can find a healthy great relationship like yours. Big smiles, Julie

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Elara April 5, 2013 at 6:15 am

Awwww, this really makes me want to cry… It’s so true, and it’s so hard, narcolepsy has been a big reason my last three relationships have failed… they are always aware before we start dating… and then usually its what breaks us apart… :(

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julie April 5, 2013 at 12:20 pm

Hi Elara, I’m sorry to hear you’ve had trouble with dating and narcolepsy. Hang in there! You are overcoming adversity daily and you are worthy of being loved and supported. With gratitude, Julie

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Stephanie Suttle April 12, 2013 at 10:38 pm

Thanks Julie! You are always an inspiration and a ray of hope to those of us with N. Thanks for always telling it the way it is. I think you make it easier for the rest of us to do the same. And to feel proud of our accomplishments and less saddened by our struggles.

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julie April 14, 2013 at 5:09 pm

Thank you so much for your on-going support, Stephanie. I continue to gain courage to “tell it how it is” from the supportive feedback of friends like you. :-)

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Kelly February 7, 2014 at 4:07 pm

As always, Julie, thank you for sharing your story. The worst of my symptoms started over five years ago, and shortly after this I met a wonderful supportive man. Unfortunately, instead of my symptoms resolving, they went up and down – the downs including an inability to work and stay awake for more hours in the day than I was asleep. He was the one that helped me learn my symptoms – I never knew there were times I’d suddenly start slurring my speech, zone out, or walk into walls and people as if I were drunk (I would get so out of it I wouldn’t realize this!). He brought comfort as he’d coming running to help when the sounds of his favorite scary movies made me jump and then my would knees give out.

But after years of referrals to the wrong specialists, doctors just couldn’t figure it out. At times he’d accuse me of being lazy and not pushing through like everyone else does – because we’re all tired. He accused me of deliberately costing him money so he “couldn’t live the life he wanted” and often brought up I never had a real diagnosis so it must be in my head. He went from loving and supportive to saying, “You’re an adult. Take care of yourself.” I later learned he was at his worst during the times he was cheating – that was his way of coping with a girl who just went up and down with her energy levels without warning and had to cancel so many social outings last minute.

In the end it was a blessing to be broken up with him – but terrifying to know in times I’d fall over in the house I would have no one to help me. I know how he chose to handle the challenges were mean and selfish, but I often battle with the fear of holding someone else back – even after diagnosis and starting treatment. I worry about having to go off medication to have a baby. I worry about the financial baggage I carry from the debt I’ve collected in the five years of trying to figure out why I just can’t push through like all the other average tired adults out there.

This is a new diagnosis for me – so the stigma of ‘lifelong condition’ is still one I am not sure how and when to process. All of the future I have imagined for myself has strangely changed and I’m just not quite sure how to put meaning to that just yet. My diagnosis has been a blessing to weed out this lovely man with a dark heart – I may have never known it until decades into a marriage with him. Yet it also adds to the isolation I have felt in processing it all. Your shared stories and experiences bring so many, including me, hope and clarity. My appreciation and gratitude is immense. Thank you Julie.

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Donna McVey May 29, 2014 at 11:38 pm

Hi Julie, I just read your post on how you met your current boyfriend. what a lovely story. If there are any other handsome gents out there who respect and understand what its like to live with Narcolepsy, let me know ! lol x
I struggle with Narcolepsy at many levels and your blog is inspiring . I am also not keen to speak openly about having the condition at all, as i am a personal trainer and worry it would damage my business , your work to raise awareness is so welcome and makes me realise i have a responsibility to raise awareness too. x

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