My journey with narcolepsy: The struggle to get a timely and correct diagnosis

By Elizabeth Wilson
Published November 14, 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.

Elizabeth Wilson's journey with narcolepsy was a long and arduous one. This condition has left its mark on various aspects of her life, from her academic performance as a child to her mental well-being as an adult. Her story underscores the importance of having a supportive medical team and provides insight into what it is like to raise and advocate for a child with the same condition.

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. 

A delayed diagnosis wasn’t entirely the doctors’ fault. In many ways, they are limited by an insurance-driven healthcare system, and there isn't always time to deeply connect with a patient and their needs. At 38, I was so used to being tired all the time that it was a normal state of being for me. Finding a neurologist who validated my experiences, even when I lacked the words to adequately explain them, may have saved my life. 

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 want doctors to know that narcolepsy is more complex than just falling asleep at inappropriate times. Sometimes, patients might use words other than "sleepy" to describe their symptoms. Some patients might say they are "tired" or "fatigued," while others might complain about having insomnia or difficulty sleeping.

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.

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