Living with Narcolepsy & Cataplexy

A unique story about my long road to receiving a diagnosis, and tips for managing day to day life with this rare disorder, in an effort to help raise narcolepsy awareness.

written by Di Spillane (a narcoleptic )

” Every person has their own personal journey “

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Hallucinations: The Shadow People

I never mentioned my hallucinations due to being afraid that I would be labeled crazy and then put away. I see, hear, and smell things that aren’t really there when I’m pushing myself to keep going.

I believe that my narcolepsy symptoms began to show when I was approximately 10 years old. I was so scared of being alone in my bedroom, especially once the house was in darkness as that is when the shadow people would appear.

I would be in bed absolutely petrified, unable to move or speak as I watched the shadow people move. I was certain that if I moved, or attempted to put a foot on the floor, the person under my bed was going to grab my ankle and drag me under. If I were to manage to get up, I knew that I would never make it out of my room as the person next to my cupboard would stop me.

I used to prefer having noise in my room when I went to bed, either the TV or radio, I found noise to be compforting, and I would wake up when my mother came in to my bedroom to turn off my noise before she went to bed. Once she left the room, they would start to whisper and discuss how they were going to get me.

I could never explain these people to anyone, as mother would tell me that I was imagining it, or say things like “look at for the boogie man” when I was about to go to my room at night, her comments definately Did Not Help!

I still hear, see, and smell things that aren’t there from time to time, but nothing has been as hard to live with as the shadow people from my childhood. It was a relief to find out after I was finally diagnosed (aged 49), that hallucinations are very common among those who have narcolepsy.

Have you seen, heard, smelt things that weren’t really there too?

Photo by Engin Akyurt on Pexels.com

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