In 2013, I was a newly independent adult. I had just graduated from college with a bachelor’s degree in Health Science. I moved to the central coast of California; home to beautiful beaches and amazing weather.
I worked full time as a medical scanner and part-time as a waitress. My family was not in the area, but I had close friends nearby and was meeting lots of new people. It was an exciting time in my life; everything felt like an adventure. I just didn’t realize what kind of adventure was ahead.
One day, at my medical scanning job, I felt overwhelmed by sleepiness. I tried everything I could think of to stay awake, but I could not keep my head off my desk. I had to sleep, so I snuck into an empty office. I laid down on the floor with a blanket bunched up into a makeshift pillow and slept. I was able to drift off within seconds on the hard, dirty floor, with the fear of getting fired looming over me.
Increasingly, it became a daily struggle for me to stay awake. Driving more than 30 minutes became nearly impossible. One day, I went to a job interview two towns away, and on the way home, my eyes began getting heavy. I was having trouble focusing. I knew I had to get off the road. Pushing myself to focus on driving, I used every ounce of strength to keep my eyes open as I found an off-ramp to pull over. I pulled into the first parking lot I could find and napped in my hot car without air conditioning.
I continued to suffer every day thinking it was because I was pushing myself too hard. I told people that I thought something was wrong with me because I was heading to bed at 5 p.m. any night that I did not work. People said, “You have two jobs; of course, you’re tired.” After almost a year I finally realized, this was not a normal level of tired, even for my lifestyle. Something was wrong, I was barely functioning, so I made an appointment with my doctor. She immediately told me “I think you have lymphoma,” I was in complete shock. At 24 years of age, my doctor told me that I may have cancer; my mind was blank.
Once the labs came back without evidence of cancer, my doctor stopped trying to help me figure out what was going on. She said that I was young and healthy and that I just needed more exercise. How does someone go from “I think you have cancer,” to “You’re fine.”?
A year later, I finally found a doctor that was determined to help me find a diagnosis. For two years, I was seen by an endless string of specialists and was tested for an array of things including adrenal fatigue, early onset menopause, and depression.
Those two years were absolute agony; the fear of losing my job was a regular occurrence. Eventually, I had to reduce my weekly schedule from five days a week to four. This affected my paycheck more than it affected my sleepiness. I slept all day on my day off, but I still had a problem staying awake on the days I worked.
My relationship with my very sweet boyfriend suffered. As understanding as he was, he would still become frustrated with my limitations.
On our two-year anniversary, I surprised him with a romantic trip to Big Sur. There was a huge storm; ideal weather for our cozy cabin in the forest complete with a fireplace and an outdoor tub. It should have been the perfect weekend. I drank coffee each day to prepare to stay up until an acceptable adult bedtime, but the entire weekend I lost the fight against sleep. My head would get heavy and I’d blink and drift off. I could see the disappointment on his face, and it broke my heart. I wanted so badly to be a normal girlfriend and spend time with the person I loved so deeply. I lost parts of my life to sleepiness during those years.
Finally, at age 29, I received some answers. My sleep specialist told me that I have narcolepsy, a rare, chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. One of the symptoms of narcolepsy is excessive daytime sleepiness, which is sleepiness that is comparable to how someone would feel after staying awake for 48-72 hours. That is exactly how I had been feeling. Getting a diagnosis was a huge win!
Now that I have a diagnosis my life is easier. I do my best to get lots of sleep every night and take my prescription medication daily. I work forty hours a week and most of the time I do not have trouble making it through the day;I can usually stay up until 9:00 pm. That is not to say my life is without limitations. It’s not uncommon for friends to get upset with me when I leave a social gathering early or cannot make early morning plans. It takes all my energy to work a full-time job.
All in all, the quality of my life has improved to a level for which I am very grateful. The months leading up to my 30th birthday were not filled with dread, as many people experience when entering a new decade of their life. I was excited about my thirties because I slept through my twenties!
I will continue to live life to the fullest and help others do the same to spread awareness about narcolepsy. The average period of time to reach a diagnosis for narcolepsy is 3 to 5 years– due to misconceptions and lack of knowledge. I hope to improve the time it takes to get a diagnosis.
I plan to pursue a master’s degree in Environmental Policy so that I can make a positive impact on the health of humanity and our planet. People cannot see the challenges I have overcome because narcolepsy is an invisible illness. What people will see is my ability to persevere. This journey with narcolepsy has shown me that there is no challenge that I cannot overcome. You may just know someone living with an invisible illness.
Submitted February 8, 2019
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.