Ten Things I Wish I Had Known Before I Married a Narcoleptic

This is my 50th post!

Pretty neat, huh? I wasn't exactly sure how long I'd write here, really. I'm pretty excited to publish #50. In honor of that, I thought it would be cool to post something I've been mulling over for awhile. I’m often asked about this: what do I wish I had known before I married a man with narcolepsy? A few things come to mind...

Ten Things I Wish I Had Known Before I Married a Narcoleptic 

1. A “good” doctor is key. Narcolepsy isn’t like any other illness. It isn’t just about sleep. It’s also about mood, self-esteem, daily functioning – quality of life. I wish that I had known that any old sleep specialist won’t do. The doctor needs to care. 
2. Finding the right plan takes time. Several different medications are used to treat the symptoms of narcolepsy and cataplexy. Not all of these medications affect narcoleptics the same way. Not all narcoleptics even have the same symptoms. Not all treatments (sleep schedules, dietary restrictions, exercise programs, psychotherapy) work for every sufferer. You’ll have to put in time and research to find the right treatment for your situation. I wish that I had known that trial and error is just part of the process.
3. Be careful not to let narcolepsy isolate you. Yes, it can be embarrassing to be with someone who always falls asleep in public. A narcoleptic’s occasional sluggish thoughts and speech can be awkward in a social setting. A cataplectic attack in front of others might be humiliating. Although it might be tempting to avoid these experiences altogether by separating yourself from the rest of the world, don’t. Narcolepsy can be isolating enough. Positive association with friends and family is key to maintaining normality. I wish that I had known just how important staying connected is to my family’s well-being.
4. Not everyone will be supportive. There will be those who just won’t understand your loved one’s illness. There are those who won’t even believe it’s that big of a deal. There are those who will make impolite jokes, insensitive comments, and generally get on your nerves when it comes to their lack of sensitivity about narcolepsy. Although you may want to try explaining the gravity of your situation until you’re blue in the face, don’t waste your breath on those who don’t care. I wish that I had known that I’m not obligated to defend our choices about narcolepsy to anyone, especially those who are unsympathetic.
5. There are worse things. It’s not cancer or AIDS or some other fatal malady. Yes, my husband struggles with his illness and it certainly affects our entire family. I don’t take it lightly and I wish that more people understood what a devastating disease it is. That said, it could be so much worse. I wish that I had known that "it could be worse" is a cliche that actually helps to keep things in perspective.
6. People without narcolepsy need care too. Maybe even more so. Sometimes we get so focused on my husband’s medications, sleeping habits, appointments, and general health that I lose sight of my own needs. In order to better help my husband and take care of myself, I need to stick to the obvious: get plenty of rest, maintain a healthy diet, exercise regularly, and find time to relax. I wish that I had known that sometimes it’s better for my whole family if I put my health first.
7. Hate the disease, not the person who has it. I've mentioned it before, but it's so true: I often view narcolepsy and my husband as two different people. This view goes a long way toward helping me to remember what's behind my husband's lethargy, disinterest, or forgetfulness. I wish that I had known that making the illness our mutual enemy draws my husband and I closer. 
8. Bad days are inevitable. We live in an imperfect world, so nothing will ever be perfect. With or without narcolepsy, no marriage or family is without problems. Narcolepsy will probably lead to some crummy days, but it doesn't have to mean anything more drastic than that. I wish that I had known that having a bad day isn't a sign of failure. 
9. Humor helps. Really, it does. Some of my husband's crazy sleep-speak is pretty hilarious. Every now and then, his cataplexy can even be funny. I wish that I had known that being able to laugh at narcolepsy is a healthy way of coping with a sometimes overwhelming disease. 
10. All you need is love. The Bible said it first and the Beatles sang about it. Just imagine if your love for the narcoleptic in your life was stronger than your impatience, your frustration, and your anger over this exasperating disease. I wish that I had known that with real effort, love really can surpass all of the negativity narcolepsy can generate.

In case you didn’t notice, I didn’t say that I wish that I’d known my husband had narcolepsy. I left that out intentionally. It doesn’t matter, really. Even if I'd known that he was ill, I would've fallen in love with him anyway. But a list like this would've helped me to know what I was getting into.

Maybe My Husband Isn't the One With Narcolepsy

I received the most touching email recently. It was from a woman who, like me, has a husband with narcolepsy. While her email was full of love and admiration for her hubby, it was also laced with stress, fatigue, and angst over her situation. She seemed torn between being in love with a great guy and the difficult reality of loving someone who can't always love you back properly.

I think I've found my twin sister.

In her email, this big-hearted woman said, "I suffer from Narcolepsy, he is surviving it." That statement reached deeply into my subconscious and yanked out the same realization for me. It truly is a deep thought. Let me explain why.

Since childhood, my husband has been... different. People thought he was weird, difficult, lazy... nothing positive came of living most of his life with an undiagnosed sleep disorder. Now that he's an adult, a bona fide Narcoleptic, and taking medication appropriate to his condition, he is no longer a victim - he is a survivor. He survived life's hardships undiagnosed and now struggles valiantly to survive everyday. He fights prejudice, ignorance, and apathy of his illness. He has a family who loves and supports him, a job that (sometimes) tries to understand, and health insurance that covers him for now. He's truly surviving.

It's different for me. Because my husband lived for many years knowing that something was off, it was a relief for him to finally hear that he was not "weird," but ill. Despite knowing my husband for much of my life, I had no idea that he was ill until after we were married. His diagnosis presented a new world for me: living with a chronically ill spouse, researching an illness that I barely understood, and a less certain future for my marriage.

So when I read the email from my long lost twin saying that she was the one who actually suffered from narcolepsy while her husband was surviving it, I totally got it. Reflecting on her words, I realized that my husband and I handle his illness differently. Simply put, he deals with it, I stress out over it. I want that to change, though. In the same email, my new friend also said that there's "no magic pill" and she's right - there isn't. But changing my attitude has got to be a great first step on the road toward a solution.

Thank you Karen for your lovely e-mail.

Let Illness Destroy Your Marriage In Ten Easy Steps

If you’re currently in a marriage where one spouse is chronically ill, researchers say that your relationship is more likely than the average to end in divorce. Health problems – especially chronic ones – typically lead to other problems: financial, emotional, romantic, etc. Put that within the framework of a marriage and voila! Perfect storm coming right up. 


Living with a chronically ill spouse for many years has given me some interesting insights – including what not to do. If you want your marriage to survive your spouse’s illness, do the opposite of what you read below.

1. Focus only the illness, not your spouse. Make the illness the priority and the sole focus of your relationship.
2. Only communicate if it’s about the illness... or any other problem. Who has time to talk about anything pleasant? The illness is important, so the illness  (and only the illness) always needs to be discussed.
3. Only talk about very important matters when you’re extremely tired, hungry, or not feeling well. It’s even better if you’re both feeling lousy!
4. Never recognize or commend each other’s efforts. No one needs to hear that they’re doing a good job at anything. In fact, it's better if you can put your spouse down at every opportunity - especially in front of the kids.
5. Don’t bother to say I love you every day. You don’t need to actually say it. Come on, you’re still together, so isn’t it obvious?
6. When you feel an argument building up, go ahead and duke it out. Why should you hold back your anger? You put up with a lot and you should get to scream, shouldn’t you? You deserve to be heard – at any volume. It’s even more effective if you throw something or use profanity.
7. Never go on a date. Don’t worry about keeping the romance alive. Puhleeze. It’s enough that you still live under the same roof. Going on dates, leaving each other love notes, and constantly reminding each other of why you fell in love is a total waste of time.
8. Don’t worry about the healthy spouse staying healthy. Constant worry and daily stress might take a toll, but so what? If you’re not the sick one, you don’t require any attention. Try not to get enough sleep, don’t bother to exercise, and just ignore your constantly rising stress level.
9. Blame your spouse for being ill. Hey, they chose to be sick! The whole situation is all their fault. After all, couldn't they have chosen an illness that was easier to deal with?
10. Stay isolated. Don’t go anywhere as a couple. Make sure not to attend parties, dinners, or accept any invitations to anything even remotely fun. Make sure not to have people over. Stay insular and focused only on yourselves and your problems. After all, the illness is the only thing that matters... right?

A Narcoleptic's Guilt

Image courtesy of bigjom/FreeDigitalPhotos.net

My husband apologizes a lot.

I didn't notice this until a couple of years after we'd been married. I figured it was a quirk. We'd often have those conversations that are parodied on TV:

"I'm sorry."
"Why are you sorry? Stop apologizing."
"I'm sorry, I'll stop."
"You just did it again!"
"Sorry..."

...and so it goes.

Over time, I realized something. He apologizes sincerely, because he feels guilty. He feels guilty because his illness is a weight that prevents him from being the husband he envisions in his own head.

That's pretty deep stuff right there.

Imagine that - in your mind, you should be THIS. Whatever THIS is for you as a wife, husband, friend, sibling, employee, you have a mental picture of what you should be.

But you can never be that.

It isn't your fault, so why feel guilty? This really made me pause when I realized how my husband was feeling. Every day, he felt like he wasn't doing enough. Every day, he took stock of his failures. Lists unchecked, chores left unfinished, projects abandoned. Day by day, it stacked up - this pile of failures. It's his pile, and only he knows how tall it stands, but for him, it's always there. That makes me so sad for him because that is certainly not what I see. I'm so proud of him for getting up each day and persevering despite his constant fatigue. I don't know how he does it sometimes.

As if the weight of narcolepsy wasn't enough to bear, he has the added burden of guilt. Hopefully my bearing some of the load will allow him to breathe.