The Narcolepsy Monster

As someone who has been through years of therapy, I have gained skills that help me to live day to day and accept the challenges that I face. One of the skills that have helped me profoundly on my journey with narcolepsy is being able to separate myself from the disorder.

Yes, I have narcolepsy, but I also have so many other amazing features that make up who I am. My narcolepsy does not define me, and it never will.

Not defined by my narcolepsy

Often, the acronym PWN (Person With Narcolepsy) is used in place of "narcoleptic person." From the moment I first read about the reasoning behind this preference, I resonated strongly with it. I could apply this to other areas of my life too. For example, I knew I always hated being called an anxious person, rather than a person with anxiety, but I never really know why it bugged me so much. After all, it is just semantics.

The idea is all about separating the person from the disorder. I have narcolepsy, and I have anxiety, but these things do not define me. They are just symptoms that I experience, not traits that make up my character. This is where I came up with the idea of the Narcolepsy Monster. When my symptoms flare up I like to say that it is the Narcolepsy Monster tapping on my shoulder.

Reminding myself this is not my fault

When I know I need to nap soon I can say that it's just the Narcolepsy Monster rearing its head. I find that this helps to alleviate some of the shame and stigma that surrounds my condition. It is not my fault that I have narcolepsy, and I know that logically. But sometimes my brain needs to be reminded with this kind of subliminal messaging.

I feel such a sense of shame each time I have to retreat from life because my narcolepsy symptoms are flaring. Every day that I have to go to my car on my lunch break to have a nap. Or sit down because my legs are screaming that a cataplexy attack is coming. When I have to say no to that social event because I know I won't be awake past 9 p.m., even though I desperately want to go.

Separating myself from the symptoms

All of these things can make me feel guilty, or broken. However, once I learned to start separating myself from the symptoms, this guilt started to ease. I can put all of this shame and hatred on the shoulders of the Narcolepsy Monster.

Those of us living with narcolepsy have no reason to feel shame or guilt. I am proud that I manage to live day to day despite all the obstacles that the Narcolepsy Monster throws at me. I am living with symptoms that make parts of our lives really difficult, and even if all I achieved today was getting out of bed, I am proud of myself for that.

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