Narcolepsy is a complex and often overlooked condition, which can take years to identify and diagnose. I consider myself fortunate to have a diagnosis that has helped me to understand a lifetime of bewildering symptoms. I’ve had narcolepsy for as long as I can remember. I lacked a frame of reference for normal sleep, which made the path to diagnosis even more difficult than usual.  

Navigating narcolepsy as a child

As a child, I woke up frequently throughout the night and often confused my dreams with reality. I was often overwhelmed by waves of sleepiness and put myself to bed long before my parents noticed. My parents considered me a "good sleeper," unaware that vivid and sometimes terrifying dreams disrupted my sleep.

As a teen, I left home to attend a highly competitive performing arts school. I often woke up, unable to move or speak, while ominous figures entered my dorm room. I now know that I was experiencing sleep paralysis accompanied by hypnopompic hallucinations, a common symptom of narcolepsy, but at the time, I thought demons were chasing me. 

I started catching myself “spacing out” during classes and rehearsals. These episodes left me disoriented and impacted my ability to keep up in class. I missed assignments and couldn’t remember choreography. I came to believe that I just wasn’t talented enough to achieve my goal of becoming a professional dancer, and by the age of 18, I abandoned my dream entirely.

I perceived my failure as a lack of willpower. After I started therapy to address these feelings, I was diagnosed with depression. The stigma of depression delayed my narcolepsy diagnosis. 

My journey to a correct diagnosis

Over the years, I saw many physicians who were quick to dismiss my complaints as symptoms of depression and, later on, the stress of adjusting to parenthood. Eventually, I ultimately gave up on doctors and resigned myself to the reality that my life might never get better.

I eventually found a great neurologist who agreed to treat me. However, it would take another three years of testing, ranging from MRIs to thyroid panels, before the doctor ordered a sleep study. 

After a positive MSLT, I started taking Xyrem, the one medication that actually helped me go through the stages of sleep in the correct order. I was amazed. I finally realized this was what a normal sleep pattern should feel like. Unfortunately, due to nausea, I had to discontinue the medication, but not before it gave me back my self-worth and hope.

Caring for the next generation

The story of my diagnosis doesn't stop with me. I also have a child with narcolepsy. His path with the condition has been different from mine. Mainly because he has me to advocate for him, but it certainly hasn’t been easy to find him care as well. 

When my son was young, my partner and I started noticing possible narcolepsy symptoms in his behavior, and we immediately discussed our concerns with my neurologist. Because my son also has autism spectrum disorder, the initial sleep study was extremely traumatic for him. It took years to do a sleep study successfully and get a diagnosis.

After preschool, we homeschooled him to accommodate his emerging symptoms better. When he decided he wanted to attend a public high school, we faced enormous obstacles when we requested accommodations. Despite providing his teachers with evidence and information, many refused to accommodate him and chose instead to question the legitimacy of his medical needs. The school system is simply not set up for most children with disabilities, especially those without documented “proof.”  

At the age of 18, my son repeated his sleep study and received an MSLT result consistent with a narcolepsy diagnosis. The positive MSLT allowed us to get insurance coverage for treatments and accommodations at school.

I hope through sharing my personal journey, I can spare others the feelings of confusion, failure, and worthlessness that I have unfortunately felt over the years. I hope that this will lead to greater narcolepsy awareness and assist others in seeking an appropriate diagnosis.