Friday, August 27

A Narcoleptic's Guilt

Image courtesy of bigjom/

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!"

...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.


  1. Ahhh, Narco guilt-it sucks! I used to be an expert multi-tasker able to juggle multiple projects and commitments. At least until the narcolepsy started to get worse. Now I forget things constantly and struggle to get everything done that needs to be done. I get so mad and frustrated!! I hate the feeling of being 'less than'.......grrr!!!!

  2. No one likes feeling "less than" - that's a great way of putting it. Multi-tasking is out of the question for my hubby now... bummer, I know.

  3. Wow. Reading your post just made me realize that I do the exact same thing: I constantly apologize. I always feel like I must be lazy; I feel so guilty for giving in to the intense desire to take a nap after I get home from work. My husband always asks me what I'm apologizing for and, sometimes, I'm not even sure. But reading your post just made me realize so many things. I've had Nw/C since I was about 12 but didn't get diagnosed until my mid-20s (I'm 32 now). My parents took me to the pediatrician when things started, but he came to the conclusion that I "just need more sleep than the average person." Before I started falling asleep in school on a regular basis, I was a total brainiac. I remember making perfect scores on both the math and language sections of the Iowa Test of Basic Skills in 7th grade. Ha! Needless to say, a repeat performance of a feat like that was never made. I somehow managed to slug through high school and a bachelor's degree, but, looking back on how utterly exhausted I was, I sincerely do not know how (and my grades betray my poor performance). My father, who is in medicine, always wanted me to be a doctor and made no attempts to hide his dissaproval. I remember my mother accusing me of being on drugs, saying that I had "lost my creativity" when I was in high school. Wow, I'm full-on crying right now. Sorry for all the rambling, but your post just opened my eyes to so many things that I feel like I should have seen but never have.

  4. lab, thanks for sharing that amazing experience. I just know that someone will read it and say, "That's me!" I really think one of the hardest things about narcolepsy is that people just don't get it. My husband still gets labeled as lazy or slow and it drives me nuts!
    Thank you for reading and following and hang in there! We're all in this together.

  5. That blasted Narco guilt! I had 4 children before I was diagnosed with N/C. My baby was 7 at the time. Oldest was 12. 33. I was Looking back over their younger years, and became overwhelmed with guilt that I brought them into this world only to sleep their life away. For the first years of our marriage my husband was working full time and going to school full was pretty much JUST 4 small children all those years. Not sure how we all survived it, but we did. Anyway, I love my babies, and would never wish that I didn't have them and my world would fall all apart if they were ever taken from me, but I do feel horrible amounts of guilt that this is who they get for a mom.

  6. not sure what happened there, lol, but I meant to type "I was 33." I also failed to mention that I've been symptomatic since I was in 3rd grade. That's when the Hallucinations started. Sorry for all the comments. Your blog is quite fascinating AND it's scaring the heck outta me :) I have a lingering fear that one day my husband of 15 years (together 17) is going to get sick of this life and leave in the name of narcolepsy. He NEVER complains, probably because he knows my feelings are so fragile, but at the same time, I want him to be honest about his feelings, if he's holding anything inside. All I ever get from him as far as frustration goes, is he gets tired of repeating himself 5 minutes later after I've forgotten what he just told me....and he grows weary of trying to explain simple things to me that my mind won't comprehend. Those are the only frustrations he lets out, as kindly as he possilby can...

  7. Thank you for writing this post. Your husband is truly blessed to have you as his partner.

    I just started crying (and I'm not really a crier!) because I can SO relate to the strong feelings of guilt and frustration caused by mental fatigue. When I see all the things around me that I feel I need to finish but never seem to be able to complete, I can't help but be depressed. Its more than just the unfinished "to-do lists", the missed workouts, and the unread emails, it's also the deferred dreams and missed opportunites to cultivate more meaningful relationships- three business ideas on hold, countless rainchecks given to friends and loved ones because "I'm too tired to hang out tonight". This is my norm and I despise this lifestyle. The narcoleptic brain fog is also costly and wasteful- the late fees because I forgot what day it was, the car accident because I thought I was awake...I could go on forever but I'm too sleepy!

    In contrast, my 67 year old mother is a walking talking "energizer bunny" and does more in one hour than I can do in one day. Watching her move tirelessly from one project to the next literally makes me fall asleep! Having narcolepsy has been the biggest blow to my self- esteem and ego because I can't stop comparing myself to "normal" people or the life I once lived before "the brick" hit me!! Sleep walking through life is a living hell but it has helped me to cherish the rare times when I do feel awake, alert, and alive- no matter how long the feeling lasts.

  8. In addition to everything else, narcolepsy makes a guy suddenly feel weak and vulnerable. Most women seem to need their guys to rarely/never show the type of weakness a Narco experiences. On top of this, the social awkwardness Narco's feel is a direct hit to a guys libido (I mean a guy's ability to seduce, not his ability to perform).

    When you suddenly going from charming to a sleep deprived fool who feels slightly insane and extremely awkward on a regular basis, it destroy your sense of manhood.

    So as a single narcoleptic male who's sporadically felt charming and manly amidst long periods of being a socially inept zombie, all I can say is that I hope you are letting your husband seduce you and focus on any of his manly strengths he feels he's retained in spite of this Living Hell.

  9. Ok, this is tough. My wife of 30 years had progressed from fibromyalgia to chronic fatigue to degenerative disc disease to alcoholism to what now appears to be narcolepsy (sleeping at least 18 hours a day). Some days she's not out of bed until 5:30 at night. We've gone to every type of Dr imaginable - except the guy with the bone in his nose. I'm sorry to say that at 55 I'm just about clean out of patience with the diseases and my wife's resignation to only focus on her needs in life. I know that is probably all she feels she can do, but I'm tired of playing servant to these conditions and robbed of any active life or intimacy with her. I've been a monk for over 20 years and I'm just now getting fed up with it. Funny thing is, I'm now the jerk for wanting my desires taken into consideration.