Anxious woman with her face in her hands and a hotel floor plan in a thought bubble in the background

Fear of Hurting Myself or Others

As a person with narcolepsy, I am always thinking about safety. It is the one thing that I am always aware of.

Considering safety

I analyze the stores I walk into, and I always know where there is a bench or place to lay down nearby.

When planning for a trip, I will bring up all the pictures and maps of my destination to get an overall idea of the location. If I am staying in a hotel, I will look at their gallery photos and try to get a sense of the lobby and outside areas. Knowing the layout of the hotel before arriving is helpful in choosing the location of our room as well. I do not do well next to the pool or if my room is in a high-traffic area.

Trip planning and traveling can be complicated, however there are other parts of safety that I worry about.

Worried about dropping a baby

When I get overwhelmed with emotion, my cataplexy gets triggered. This emotion can be anything from joy to sadness. It is not always just my safety I am concerned about.

One experience was troubling for me a few years ago, and I still remember it like it was yesterday. My granddaughter was born, and I traveled with my husband to see her for the first time. She was only a few days old and fresh from the hospital. I was so excited and emotional that I was afraid to hold her in fear of dropping her. I have never had that fear in me before, and I was not expecting to feel like that!

We went out to a restaurant, and I was finally brave enough to hold her while we were in a booth because the table was there, and I had people on both sides of me. Nobody knew that my brain was screaming “DON’T DROP THE BABY!!!!!”

My husband asked me why I had not held her earlier, and I explained to him through tears that I didn’t trust my body. It had never dawned on him that I had that inner turmoil. Even after all these years of being supportive and getting educated about narcolepsy and cataplexy, it was still a surprise to him.

Alleviating my apprehensions

Looking back, I now see that I could have sat in a particular way on furniture or asked someone to assist me and be next to me in case my body went limp. I was too embarrassed and ashamed to do that the first time I saw her. I also think my emotions were so high that all “practical” thinking was out the window. I was kind of working with half capacity.

When my son was married, I did try to alleviate any apprehension I had that day. My husband agreed to concentrate on watching my mannerisms. He watched for my stability and whether I was starting to slur. We made sure the shoes I wore under my dress were flat and that I was sitting every chance I could get.

I could barely feel my legs that day, and I was worried I would ruin the wedding if I had a cataplexy episode. I always say that having one is worse for the people around me, because they are scared and do not know what to do. That is the last thing I wanted anyone to remember about their special day!

Preparing beforehand

I am still working on having confidence to attend big events. The fear is overwhelming to deal with. This is why I go through the steps of researching and gathering as much information as possible before I leave my home. I may never get to the point where I do not plan as much, but for now it helps me to know the layout of a building and the options I have. Nobody wants to end up facing the floor!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.