Narcolepsy: It's the Little Things
Last updated: June 2023
Being diagnosed with narcolepsy changes your life in many ways. There are some changes which are easy to notice from the outside — things like taking naps during the day, suffering from cataplexy attacks in the most inconvenient moments, falling asleep in the middle of a conversation... and so on. These things are the most noticeable, and though they undoubtedly cause profound alterations to our lives, sometimes it's the "little" things that affect us most of all.
It’s the things that no one ever considers, and only those who live with this condition will ever understand.
The 'little things' that narcolepsy can impact
Because everyone has different experiences with narcolepsy symptoms, it’s impossible to know exactly what little things narcolepsy takes from each one of us.
For me, these are the "little" things that affect me the most:
Not being able to watch scary movies
Cataplexy can be triggered by different emotions and activities; anger, frustration, laughter, and fear are some of the main things that can trigger a cataplexy attack for me. Watching scary movies is unfortunately out of the question.
Not eating out
It may sound strange, but eating out gives me slight anxiety these days. Eating usually makes me feel sleepy, especially if I eat a carb-filled meal. Eating at the office is not an option for me, as it will either render me completely useless for the remainder of the day or trigger unwanted sleep attacks. I also avoid eating anything too heavy when going on dates or out with friends because I’m terrified of falling asleep.
Being unable to read an entire book
When I was younger, reading was my life. I was a "serial reader" and would read as many as 4 or 5 books a week. Narcolepsy has taken that away, too, now. It’s almost impossible to finish even a chapter without falling asleep or suffering from so much brain fog.
Missing out on moments
My family still doesn’t understand, but there are so many moments when I have to remove myself to take a nap or avoid going somewhere entirely simply because I have no energy. I suspect that they think that I’m merely moody or antisocial... How I sometimes wish that was the case.
Not being able to feel freely
People take feeling emotions for granted so much, and they have no idea! I miss being able to laugh without fear or argue passionately without worrying about my voice catching or my knees trembling. I even have to remind myself to put down my glass of water before I start laughing simply because I’m so afraid to break it.
Fearing every day
I don’t think I remember what it’s like to wake up without instantly feeling anxious. Every single day, I worry about whether I will hallucinate strange things, be able to finish my work, or hurt myself somehow when having a cataplexy attack.
What we take for granted can matter most
Ultimately, these "little" things have the potential to matter so much more than the big ones. I think that it’s the little things that people take for granted the most, and the toughest part is that these are the things that few people will ever understand.
Individually, they may seem so trivial, but by adding them all up, it's easier to grasp the extent to which all the little things can take such an enormous toll on your life.
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