Monday, August 13

The Isolation of Narcolepsy

I feel a little down today.

This has been one of those weeks when I'm repeatedly reminded of just how much narcolepsy can isolate a person from the waking world.

Most people just don't get it. They watch your loved one fall asleep and judge. If your spouse isn't by your side, it's assumed that they must be asleep. They make jokes, or ignore you, or interrupt impatiently as your narcoleptic loved one searches for the right words. Sometimes, you get left out of dinners, parties, and anything else even remotely fun.

But it's not always someone else's fault.

Sometimes I decline invitations because I just don't want to deal with narcolepsy in a social setting. I don't want to nudge my husband awake, wake him when he begins to snore, or watch him worriedly as he fights to control a laugh. It can be exhausting, so at times I'd just rather stay home.

Then there are the let-downs: dates aborted because my husband is too tired to continue. Movies left unfinished... until further notice. Intimate moments become awkwardly silent. When one half of a partnership is always tired, the healthy spouse must quickly get used to the old adage, "let's play it by ear."

Much of the time, I'm okay. I have enjoyable hobbies, a few supportive friends, my volunteer work, and of course, my beloved child to fill my days with joy. But sometimes... narcolepsy leaves me lonely. Which leads me to days like today, when disappointment makes me a little weepy and I go to bed early.

Gray days are inevitable. But knowing that they can't last forever helps make it okay.


  1. My husband has mild narcolepsy that is not nearly as severe as your husband's. He doesn't usually fall asleep unless he is relaxed, but he is capable of falling asleep at just about any time and goes into REM sleep half awake. I give you props for dealing so compassionately with your husband. I know that, even now that I know what is wrong, I sometimes get my feelings hurt when we are cuddled up and he suddenly falls asleep. I need to understand and be more selfless, but sometimes it's easier to just wish things were different.

  2. My husband is waiting on a diagnosis but his doctor suspects narcolepsy. We are a young couple and have two small children. It is very lonely and frustrating, I can't imagine a whole lifetime like this.

  3. Hi! I am grateful that you have designed this website and are willing to share personal information. I think I am drawing near to the end... I am not sure how much longer I can live with my narcoleptic husband. I have been through hallucinations, mood swings, messes and disapointments. We just had our anniversary and he meandered around the house working on his projects and complaining of not being able to wake up. At around 9 pm he came in my room hoping we could have "special time", but I was ready to go to bed --- he then got upset. I am tired of living by his schedule and putting up with his mood swings! Is this the norm?

    - A Friend

  4. Sometimes I feel so sorry for myself living with an invisible illness. It's so hard to have your illness blamed on perceived character flaws- late for work because you're irresponsible, falling asleep because you're bored/ boring/ don't know when to go to bed, and dozens of other things. I also feel so sorry for my husband- constantly watching movies alone while he tries to fill me in between naps, and facing a lot of the same alone moments I know you understand all too well.
    I still remember going to bed the night I first had been taking provigil. About 5 minutes after we went to bed, I noticed my husband looked elated. He was so happy that we could just lay in bed and talk! It had been so long he said he forgot what that was like.

  5. <3 I've only just found your blog while doing a bit of narc research. As the wife of someone with severe Narcolepsy n cataplexy. I understand every single bit of that frustration.

    It's hard work sometimes. Not always. But there are times, as a narcoleptics wife, that I just feel like "ARGHHHHHH your needs are forefront in my mind all the time, can't you see how it's not only your life that has been affected but mine too"

    I feel so guilty putting that into actual written words.

  6. My partner just found your blog and it definitely mirrors her sentiments. We try to keep a sense of humor about it as much as possible but there are definitely times she is frustrated as you sound. I'm sure a lot of people benefit from knowing their experience is not unique. I hope its therapeutic for you as well.