Tuesday, July 24

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.


  1. Hello, I am happy to follow your blog and am surprised that there are not more support groups/forums for spouses of people living with narcolepsy. I appreciate reading about your experiences with your narcoleptic husband, and it's a relief to realize that others share the same struggles in their relationships with narcoleptic spouses. I hope you'll specifically discuss some of the day-to-day issues, problems, and solutions that you've encountered/experienced with your spouse and how you've managed to maintain a healthy, loving marriage despite the inevitable strains of narcolepsy.

  2. I have narcolepsy and so many times I've thought it would be great to have a support group for survivors, as you call them, and a support group for their loved ones, the sufferers... And then I decide I need a nap before tackling a project like that :)

  3. Thank you for sharing that statement. For some reason, it helps to know that others understand how it feels as a spouse of a narcoleptic.

  4. I love how she put that. Perfect.