My Name’s Rebecca, and I Have Narcolepsy
Finding the will to fight for a diagnosis and treatment can be exhausting to the average person, let alone someone with a sleep disorder.
For years I was told, “It’s your ADHD,” “It’s the anxiety,” “You’re just an overworked college student.”
I just felt that I was the only one in these situations that seemed so tired all the time. Was I just over-reacting?
Slow and steady creep of symptoms
Everyone’s narcolepsy symptoms come on differently. For me, it seemed to be slow and steady. It chipped away at me for 8 years before it suddenly became too much to handle.
You know how you don’t know something is affecting you until you hit a wall? Well, my wall was when I began to seriously contemplate applying for disability. It made me realize that in just a few years, I went from holding 2 jobs, school, student teaching, and late nights, without issue, to barely being able to walk down the stairs without wanting a nap.
It got so bad that I requested my apartment be moved to the downstairs level, so I no longer had to climb stairs. Not knowing what to tell people as to why I was so tired was hard.
Finally having an answer
I got an answer because someone knew to ask the right questions. I’ll never forget the day of my official diagnosis. My doctor walked into the room and announced, “Rebecca, you failed [the MSLT]. You have narcolepsy.”
I burst into tears, tears of joy! I finally had an answer to what I was experiencing. I was no longer just lazy, or unfit, or had a bad sleep schedule. Having this knowledge meant that I could find ways to cope with it. It meant I knew what I was treating.
A symptom called cataplexy
You just don’t know what normal is until someone explains it to you. How was I supposed to know that dropping things when you laugh wasn’t normal?
In my head, I explained the phenomenon as your brain just losing focus on what you’re holding because you’re too focused on laughing. Well, apparently, that’s called cataplexy.
Learing to live with narcolepsy
This was the first doctor of mine who searched for an answer with me. He knew that I had become so run down and was losing the ability to fight on my own. He was the one on the phone with the medical directors to get medications approved for me, or sending in documentation to my insurance company as to why it wasn’t just sleep apnea.
I would have to learn to compromise with my narcolepsy. I refuse to use the term fight, as that is a losing battle. If narcolepsy doesn’t want to let me complete complex tasks before noon, I’ll just get the tedious little ones out the way first. Ha! You didn’t see that coming, did you narcolepsy?
Would others understand?
How would it be explaining this to people? In my experience as a social worker, people turn away from people that have a diagnosis they know nothing about.
How did friends react? They forget I even mentioned it to them the next day.
How did my family react? They told me to take some vitamin supplements.
How did my job react? They fired me.
I’m learning not to fight those losing battles. Whether they like it or not.
My name’s Rebecca, and I have narcolepsy.
Share with the community, what was your narcolepsy diagnosis journey?
Do you feel that your doctor understands narcolepsy?