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.

Narcolepsy and the Roly-Poly

Narcolepsy turns my husband into a roly-poly.

You know what a roly-poly is, right? We have tons of them in our garden. They meander along, perfectly content until you touch them. Then they immediately curl up, hiding themselves away until the perceived danger has passed and they can get back to their roly-poly business.

For my husband, cataplexy - narcolepsy's evil twin - is the worst during times of emotional stress. If you aren't sure what that means, think of the most stressful moments of your day - good stress or bad - and imagine collapsing into a skin puddle every time you react. Whether it's laughter, anger, or tears, you lose muscle tone and slide gently to the floor... hopefully. Most of the time, my husband ends up falling in an ungainly heap that looks fairly painful. It's worse than fainting because the sufferer is still awake! My husband can hear everything when he suffers a cataplectic attack - he just can't do anything about it. So maybe it would be more accurate to say that cataplexy turns my husband into a roly-poly.

Understandably, he is usually very reluctant to get emotional. While any emotion can make my husband get physically weak, the higher the emotional strain, the weaker he gets. But he isn't completely impassive. He’s just a lot more reserved than I think he would be without the constant fear of (literally) falling on his face. This emotional reluctance means that my husband avoids confrontations of any kind like the plague. Confrontations of any kind, including possibly difficult discussions with his wife, me. Now my definition of difficult and his version of difficult are vastly different. I don't think it's always that hard to review our budget or talk about our goals. My husband however, finds those conversations awfully tough. Sometimes he finds them impossible. That's when he becomes a roly-poly and hides until the danger - our difficult conversation - has passed.

Roly-polys hide by curling into a ball. My husband hides by sleeping.

I used to resent my husband's seeming indifference and avoidance of the more tedious aspects of marriage and general grown-up stuff. After his diagnosis, though, I am working to understand that he wants to have those harder conversations... but a lot of times he just can't do it. And the more impatient I act toward him at those times, the guiltier he feels about his inability to participate. The guiltier he feels, the more tired he becomes...

It's amazing to see the change in him, actually. He starts out like a normal person, listening, aware, wide-eyed. But as our conversation continues, his eyes droop dramatically, his face begins to go slack, and within five minutes, he is quite obviously very, very sleepy. He may try to hold out for a little longer, insisting that we continue, but not only is his obvious exhaustion a huge distraction, the conversation becomes more and more one sided. His responses take forever, and then sometimes they don't even make sense. His mood changes (would you be happy talking about your bills while you were falling asleep?) as does mine (frustration, mostly), and just a few minutes after the conversation begins, it's over. When he wakes, my husband is always both apologetic and embarrassed, but I'm quick to apologize too. My impatience isn't directed toward him. It's directed at this exasperating disease.

As I mentioned in a previous post, until we find a better solution, I’ll do my best to keep a firm grasp of the reigns... without making my husband feel guilty for needing me to.