Saturday, September 25

Narcolepsy and Marriage - When It All Falls Apart

Just a couple of years ago, I really didn't think we'd be celebrating our wedding anniversary this year.

At times I wasn't even that concerned about it. I wasn't angry or sad or spiteful... I just didn't care anymore.

In our family, wedding anniversaries are a big deal. My parents have been married for 33 years and every year, we try to celebrate the longevity of their love. After all, without it, we wouldn't be here. Well, my husband and I had been married for a few years when I thought -

I just can't do this anymore.

I felt myself giving up, but I wasn't even really sure what that meant. Did I have plans to leave him? Divorce? Take our daughter and disappear? No. Instead, I think I was planning a separation. An emotional separation that would mean we'd both live in the same house, eat at the same table, and even sometimes sleep in the same bed. 

But my heart wouldn't be in it.

Have you ever known anyone who was in a loveless marriage? I can't think of a sadder scenario. Two people who at some point in time wanted to be together more than anything. They were so in love they declared it to the world by getting married and uniting their lives. What a beautiful arrangement marriage is! Unless the love begins to die.

Fortunately, I didn't emotionally separate from my husband. Instead, I did something that I didn't want to do. I told him exactly how I felt. Without screaming or name-calling, accusing or berating, I just told him that I felt like our marriage was falling apart. Something was creating a crack in the marriage and that crack was becoming a vast chasm that was widening every day. So we talked and planned and saw a doctor, and soon, my husband was diagnosed with Narcolepsy. 

That diagnosis changed everything.

Now there was a reason for his behavior, his lethargy, his mood swings... but the hardest hurdle would now be changing my mentality. I had to start thinking about how to save my marriage and fight our common enemy. I recommitted to my husband and our relationship. It wasn't easy. I'm always reminding myself that my husband didn't ask to have this illness. He hates it more than I do. It's a battle, but it's worth it.

Our anniversary last week was the best one yet.


  1. Happy anniversary! I can really feel this post. I did emotionally separate from my wife and let the love die, but now with her narcolepsy diagnosis and treatment (among other things), we are trying to put our marriage back together again.

  2. This is such a great post because you are bravely addressing the strains a spouses narcolepsy puts on the marriage partnership.
    Any illness that makes such a big change in someone's personality, work habits, dependability, and overall mood is going to completely call into question all the reasons why their spouse fell in love with them.
    If anger, resentment, judging, and other negative attitudes have grown in the puzzling years before diagnosis, they are not going to miraculously disappear when the husband or wife hears the words "narcolepsy and cataplexy",
    And neither are the feelings of shame, confusion, inadequacy, frustration, ect that the narcoleptic individual has progressively collected about both himself and his spouse.
    The will to overcome these, be an advocate for your spouse, and treasure the person you KNOW THEY ARE is so admirable and inspiring. But then, so is any unselfish commitment to another when the going gets tough.
    The will on the part of the naroleptic, to keep trying when your symptoms make it so hard, to come clean with others about the way you feel and how these symptoms are making you feel, is no less inspiring. I can't imagine how hard it is to live with these things.

  3. Thanks Jeremy! I'm so happy for you and your wife putting things back together. I'm sure it will be worth it.

    Thanks JD!

    Susan, what an encouraging comment! It sounds like you really appreciate the difficulties involved. Thank you!

  4. My girlfriend has narcolepsy (severe day time drowsiness). I was just wondering if you had a advice about sleeping arrangements. It seems like she can't sleep with me in the bed. It makes me sad not to be able to sleep in the same bed with her. We just got a king size bed, but that doesn't seem to be helping either.
    Thanks, Kim

  5. Hi Kim, The advice I have is probably not very romantic, but it works for us. In fact, my response is too long for a comment, so I'm going to have to post about it... you've opened a can of worms for me with your question (which is a good thing!)

  6. My wife and I have been maried for 11 years. She was not diagnosed with Narcolepsy/Cataplexy until after we were married for about a year or so. She has been on Xyrem for about 4 years now, and lost alot of weight. No she is very thin, and this may come as a shock, I liked her heavier. The Xyrem of course knocks her out at night and its almost impossible for me to wake her, much less my 7 year old son being able to wake her. She moans in her sleep and snores, so most nights we take turns sleeping in the bed or on the couch. I am a very light sleeper and cannot take anything for sleep because someone has to be alert enough to act if an emergency arrises. This has taken a toll on our marriage, because I am the one one who gets up if our child is sick. I am the one who is a babysitter to her and I cannot work sometimes late at night or go out because she cannot be left alone with my son because of the medication. Dont get me wrong, the medication has worked wonders on her daytime sleepiness and cataplexy, but she is a zombie at night. Ive felt like a single dad for a long time and amvery resentful towards her even though it is not her fault. I am not happy in pur marriage anymore and am planning a seperation, but I cannot do so becasue she can not be left alone with my son over night. He would have to be with me 24/7. Which would be fine and great for me, but I would be basically taking her child away from her and I dont want to do that. It would destroy her. I really dont know what to do. Anyone been in this situation or similar. I feel trapped and like her guardian and I cannot leave, even if I am unhappy.

  7. my wife has had narcolepsy for all our married life.she is on modifinal , dexamfetamine & floxetine.she was a lving partner and great fun to be around always tired though :(. but she lost her job 2 yrs ago and stopped the tablets. she has now just started employment angain so started up on tablets. but now she has very bad mood swings voilent towards me . hates anything i do we dont sleep in the samebed anymore.looks staright through me at all times. i am really concerned that i have planned to leave her on numerous occasions. but my love for her pulls me back. now i think she needs help to stop this. dont know if i should talk to the doctor ? speak to her friends ? i am the one how sems to be the target so others don,t see it . please can someone helps us. i love her so much

  8. I have been married with my husband for about 4 months now, and even though I knew of his narcolepsy before we were married, I never really knew what it would be like once we were together. He is on adderall, which helps him only during the work day. Once he gets home he is too tired to do anything. I am a full time student and we have a 2 year old. So somehow I have to manage to keep the house clean, do the cooking, take care of our little girl and still manage to have time to do homework. I still feel like I am a single mother. And then when he is awake his mood swings are sometimes unbearable and the side effects of the medicine don't make it any better. I know that he never asked for this but sometimes I feel so tired and helpless and I feel like it will be like this forever. Does anyone have any advice on how to manage with this.

  9. My husband has been recently diagnosed with narcolepsy and cataplexy. I am being hugely supportive to him but he is being incredibly nasty and his temper is unbearable. I don't want to lose our marriage but at what point does it become time to not take the humiliation anymore and put the kids first? I love him but I am at the end of my tether