Narcolepsy unmasked: Advocating for recognition and support

By Nicole Zamary
Published December 11, 2023

Key Takeaways

MDLinx is shedding light on narcolepsy by sharing real-life accounts from patients who have experienced the challenges of living with this widely misunderstood condition. Narcolepsy is a neurological disorder of the sleep and wake cycle, affecting approximately 200,000 Americans.

Nicole Zamary is an assistant director in HR processing and is living with narcolepsy. She is sharing her story in hopes of educating healthcare professionals on the daily challenges individuals face due to this disorder.

Growing up with undiagnosed narcolepsy

Growing up and before my diagnosis, my family would tease me about how I was always sleeping, using it as an excuse to get out of things, being lazy, and so on. 

As I grew older, I started to feel like I was a burden to those around me. I was tired and needy and would get very irritable with everyone. The exhaustion alone can cause emotional breakdowns. Before diagnosis, I struggled with the physical limitations of my body without a reason as to why. After my diagnosis, I had a better understanding and was able to start the process of healing my mind and body.

The long road to an official diagnosis

Since the clinical presentation differs drastically, narcolepsy often goes undiagnosed for years. Approximately 50% of adults with narcolepsy retrospectively report symptoms beginning in their teenage years. 

Healthcare professionals may not always be aware of the emotional and mental toll patients endure due to narcolepsy, especially when it takes years to diagnose.

Sleep studies are an essential part of the diagnostic evaluations for individuals presenting with narcolepsy symptoms.

All of my primary care doctors I had over the years would tell me that if I ate better, exercised more, and followed proper sleep hygiene, I would start feeling better. I tried everything they suggested, including the agonizing process of “resetting my internal clock.” It wasn’t until I started seeing a new doctor and ended up in her office crying because of how tired I was that someone took me seriously and sent me to a neurologist. 

The neurologist started treating my symptoms without ordering a sleep study. As a result, over the next 10 years, I went through the process of trying different medications to try and manage the symptoms. When nothing was genuinely helping, I finally underwent a sleep study to confirm my narcolepsy diagnosis, and as a result, medications were eventually tailored to this disorder. While I still do not feel that my symptoms are fully managed, they are a thousand times better than they once were. 

Unfortunately, even after the official diagnosis, I was never given any guidance or support in terms of my disorder or how I should work to manage my lifestyle. I had to take it upon myself to do the research. I would often come to my appointments armed with information and questions. 

"To this day, I still feel as if I have to be an advocate for myself to get anything done."

Nicole Zamary

My daily struggles with narcolepsy

Because I have a very demanding job and am a stubborn person in nature, I still push myself beyond my limits, which sometimes is a detriment to myself; I ignore the overwhelming exhaustion and physical pain that I experience almost daily and continue to show up for life. What I do versus what I should do is a battle.

"I need to learn to listen to the cues my body gives and allow myself to take the time I need to 'fill my tank.'"

Nicole Zamary

I sometimes feel like a disappointment to others if I have to make last-minute changes or cancellations to things we have planned. I have plans to travel overseas for my 10th wedding anniversary, but I worry I will become too exhausted and make the trip less memorable for my husband. 

Without the support of my husband, I would not be able to do all of the things that I do. He is not only there for me for emotional support, but he does so much every day to take as much of the burden off of me as possible. I am grateful that I have built a support system that knows this and works with me the best they can.

My advice for managing narcolepsy in the workplace

As a professional in human resources with more than 20 years of experience, I would advise any person with narcolepsy, whether managed well or not, to speak to their ADA office and have an accommodation on file.

Unless your employer knows what you are dealing with, there is no way for them to be able to help. 

I understand the fear of telling an employer about a condition, but if the company is worth working for, they will work with you, and there should not be any concern. Narcolepsy affects each person differently, and some accommodations may not fit specific jobs. However, finding an accommodation that works for the employer and employee is possible. Most accommodations will not cost the employer anything but will be invaluable to the employee. Something as simple as providing a place to nap, allowing nap breaks, having an alternative or flexible schedule, and providing a stand-up desk are easy ways to support the employee. 

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