Narcolepsy and Surgery: Advocating for Myself

I have been struggling with my neck for quite a while. For some reason, I attributed it to sleeping more than the average person. It never dawned on me that I would have a spinal condition!

I learned I needed surgery and that it was the only option. My spinal cord was being pinched and causing my extremities to go numb and weak. Having surgery was scary for me; as a narcoleptic, I have had horrible experiences when being admitted into the hospital.

Staying in the hospital overnight

When taking medication for pain, I am not allowed to take my nighttime medication, and this has very big consequences.

This issue is exacerbated when they put you in a room that is close to the nurses' station. During the evening hours, it is loud and very bright. There are lab technicians who roam around with their carts, and all of this causes a “perfect storm” for me. My sleep is continually disrupted, and this causes a multitude of problems.

If I have not gotten adequate, restful sleep, I will become confused, and my cognitive abilities are affected. Not only does it make me grumpy, but it also affects my communication with my doctors.

Being disturbed in my hospital room

Have you ever noticed when a doctor or other healthcare professional enters your room, they sometimes knock very abruptly and loud? This sudden noise causes me to have a cataplexy attack. It is usually not a full-body episode, but rather an inability to speak clearly and to listen.

One time I needed to ask my doctors some important questions and had an awful time trying to do so. Every time they entered my room, they would startle me, and I could never form my thoughts in time to ask them for what I needed before they exited. When they came around the corner of my curtains, all I could get out was “I was asleep.” I couldn’t explain that they put me in a cloud of fogginess. By the time they were gone, I was just coming out of it and able to process my thoughts.

Lack of awareness about narcolepsy in healthcare settings

I had assumed that everyone knew I had narcolepsy and that they would understand my symptoms. I was so very wrong!

In my experience, the average healthcare worker does not know about narcolepsy. I am constantly educating nurses and support staff about the multitude of symptoms we have. People just assume we sleep a lot and that is it. They have no understanding of the neurological battles we fight every day. It gets tiring, but the more we explain our condition to them, the better care we will get in the future.

Being proactive about expressing my needs

I decided to take control and not rely on others to know what my needs are. I am now proactive and try to notify everyone of my condition as soon as I am admitted to a hospital or other healthcare setting.

If I am having surgery and it is not an emergency stay, I have time to prepare. I make sure my doctor has acknowledged my concerns and notes will be put in my record. If a doctor does not specialize in sleep disorders, they may not think to do this. I find it important to do so, as many people will look at their notes throughout my stay.

Managing recovery and healing after surgery

I will make sure I have someone with me for my post-op room stay. My husband knows to tell every nurse that I have narcolepsy and what that means. He knows how to explain to them that I cannot wake up abruptly by being shaken. If I am awakened before my brain is ready, I will wake in a state of confusion. I am so thankful he has been able to do this for me.

I also hang a notice on my hospital room door. It says, “The person in this room has narcolepsy and cataplexy and CANNOT be startled. Please DO NOT KNOCK on the door loudly or enter unannounced.” At first, I did not know if this would work because I had never seen a sign like this before. To my surprise, this worked wonderfully! It has made a huge difference in my quality of sleep while dealing with healing or recovery. I have found that every healthcare employee was very respectful of my needs and they were not afraid of asking questions. I am always happy to educate people about narcolepsy, as we have very different needs than others.

Start early when advocating for yourself

Do not be afraid to take things into your own hands. YOU are the driver in your recovery.

If you know you have a procedure in your future, start advocating for yourself before the date arrives. Have your support person be ready to speak up and protect you! Write your notes and hang them on the door to prevent possible cataplexy episodes caused by being abruptly surprised. Contact your surgeon and anesthesia departments and explain what you need from them. When being assigned your room, request a room away from the nurses' station. You will find most healthcare professionals respectful and thoughtful of our requests. The hardest part is learning to speak up!

Have you ever had to advocate for yourself in a hospital or other healthcare setting? How did it go? Share with us in the comments below!