My Narcolepsy Diagnosis Journey

Growing up, I played basketball, ran track, and was in a dance company. Some days, I would go from a full day of school to track practice and then dance practice right after.

Unfortunately, at the time, it was a running joke. I would have to be woken up on the bus on our way to a track meet, or there would be a bet on how long I would last.

Once I began to appear more tired, it seemed just a product of being a busy student-athlete.

How my mom describes my high school years

My daughter, Alyssa, has never been a morning person, even as a child. Most days, I ended up taking her to school due to her not getting up on time.

In high school, her tiredness did not raise concern because not only did she have a hectic schedule, she loved staying up late and talking on the phone. It wasn't until her English class freshman year that I started to become concerned. She had to memorize a poem, and it took her a significantly long time to remember. We worked on it for hours, and I just knew something did not feel right about it.

Seeing a doctor and getting negative test results

My mother noticed my symptoms before anyone else. She brought it up once to my primary care doctor, and they figured I was just a "growing teen."

Two years later, I was struggling to drive for over 30 minutes, so I decided to bring it up again to my doctor. She ran tests on my thyroid gland.

Once that came back negative, we tried one last thing – a sleeping test for sleep apnea. That, too, came back negative and after that, I did not feel the need to continue to worry about it. "It is just the way I am," I thought to myself.

My freshman year of college

In my freshman year of college, my symptoms were mild. I ended up with a 2.9 GPA one semester and a 3.4 another. I couldn't sit down longer than 30 minutes without falling asleep, but I found my way around things.

I switched my major from speech pathology because I felt my reason for falling asleep in class was that I was not interested in that field. I thought the occasional random buckle in my knee was from my knees being "bad" from all the sports I played.

Worsening symptoms during my sophomore year

My sophomore year was when my symptoms became severe. My life seemed more of a blur during this time because I remember very little from this period. I experienced my first hallucination that involved hearing voices.

I honestly thought I was in the first stages of schizophrenia. (In my defense, I was in psychology and we just got done talking about mental illnesses.) I couldn't sit 10 minutes without falling asleep, ultimately causing me to fail all of my classes and lose my job.

How my sister describes my college years

Alyssa would dose off everywhere. We would be in mid-conversation, and her eyes would slowly start to shut. At first, things like falling asleep mid-conversation or while eating were funny, but once it affected other areas of her life, I began to be concerned.

She was involved on campus, so I suggested she drop the extracurriculars and focus on her academics, hoping that would solve the problem.

Getting my narcolepsy diagnosis

I was diagnosed the summer after my sophomore year. I did my research and brought up narcolepsy to my primary care doctor. She recommended me to a sleep specialist, and from there, I took a sleep study for narcolepsy. It was such a relief knowing that it wasn't my fault that I failed all of my classes.

Walking into my junior year, I was excited to redeem myself of my previous failure. Unfortunately, that didn't happen, The new medication gave me migraines, and although I was awake, all I wanted to do was lie down. It wasn't until my senior year that I found the right concoction of medication that worked for me. I ended up receiving the best GPA of my entire college career.

Navigating adulthood with strength and joy

I have been living with narcolepsy for about 10 years now. There is not a day that goes by that I am not affected by it. I still experience daytime sleepiness. And occasionally cataplexy.

Although it's a part of my life, I don't allow it to steal my joy in life. My journey was not ideal, but it has made me into the strong person I am today.