Narcolepsy in the Workplace
Last updated: September 2021
I started working at my current employer as an intern. This is where I was first introduced to the hustle, 8 a.m. meetings, and endless amounts of coffee.
Coffee became ironic. The more coffee I drank, the more tired I became. My body was absorbing the coffee like a sponge and it stopped having any effect on my brain.
Tiredness took over
I started making excuses for my tiredness because I didn’t want to believe I could have a problem. I would blame my sleepiness on a handful of conclusions like not having enough coffee or not getting to bed early enough.
Finally, the tired took over and I would start to doze off driving on my way home. At this point, I was a risk to myself and others on the road which is when I decided to see a sleep specialist.
Diagnosed with narcolepsy
I had about a million and five thoughts running through my mind after I was told I have narcolepsy. My neurologist was rattling off my sleep study results, medication options, and encouraged nap schedule.
I kept blocking her out thinking how could this be? How will I live my life? And who is going to believe me? I was in denial and I didn't want to believe the inevitable.
Mixed feelings and weighing options
Half of me was embarrassed to be diagnosed with narcolepsy after what has been portrayed in the media. The other half of me was happy I wasn't diagnosed with anything life-threatening.
I had the option to continue to live my life as it was but now with medication to help keep me awake. Or, I could let my diagnosis keep me in bed. It took a good amount of time for me to convince myself that narcolepsy wasn't going to stop me from achieving my goals.
Joy and dread at my new job
The company I interned for offered me a job upon graduating from college. I was excited for the opportunity but couldn't get narcolepsy out of my head (literally). Traveling by plane or car to client appointments throughout the U.S. was required under the offered position. I accepted the job without hesitation and just tried to avoid out-of-state client appointments.
I was dreading the time I would have to get on a plane for a client appointment; images of missing my flight from sleeping in, having intense brain fog where I get lost or misplace something. And I was severely nervous about being in a hotel room alone as I often sleepwalk or hallucinate when I am in an unfamiliar place.
The unavoidable travel question
At this point, only a few close coworkers knew of my narcolepsy diagnosis but were not aware of my crippling traveling anxiety. I was out at a meeting with a new client and a few of my colleagues were scheduling plans for the upcoming year. The client requested that I visit a few of their other locations in California, Boston, and Texas to host in-person meetings.
With a heavy internal sigh, I agreed, quickly regretting my response. When arriving back at the office, I tried recruiting others to travel on my behalf, but everyone was booked solid.
I actually really enjoy traveling and would love to visit other states and meet other people. But traveling with narcolepsy is like carrying an extra bag of luggage you don't want to pay for.
Prioritizing my medication and sleep schedule
With my narcolepsy diagnosis, I have to be on a strict schedule. This means, waking and going to sleep at the same time, taking my stimulants at the same time, and napping at the same time a day. It's hard to do naturally so I rely on my phone alarms to keep me aligned.
If my schedule gets thrown off, it will take my body at least 3 days to recover and get back on track. This is why flying in and out of the state would take a huge toll on me. I have limited traveling by car over the years because distance driving with little to no change in scenery made me doze off.
Talking to my manager
I ended up disclosing my narcolepsy diagnosis to my manager. Afraid she wouldn't believe me or assume I was trying to get out of meetings, she took it well. I explained what narcolepsy is and the effect it has on me. She quickly jumped in to help with the meetings I had scheduled. We then came up with a future career plan that consists of limited travel.
Although my company has been very accommodating to me, I know this isn’t the case for everyone. I quickly found when you suffer from an invisible illness, it's hard for others to believe it. I considered not addressing my disorder to management because I was afraid I would be judged or lose my job. However, narcolepsy is a big part of who I am and I need to make it a priority. Traveling with narcolepsy is a risk and safety is way more important than the judgment I thought I would face.
Best jobs for people with narcolepsy?
After my diagnosis, I researched some of the best jobs for those with narcolepsy. As one could imagine, sitting down at a desk in front of a computer did not make the list. A few of the recommended jobs were in nursing, teaching, and bartending. These all were familiar, standing, and fast-paced.
Though I can see why standing jobs are better, I do find myself running around even if I’m not actually running. When working in service, no 2 days are the same. I am at hand with new experiences and problem-solving opportunities. When I do go on local appointments with clients, I feel a little bit of that on-the-go hustle.
I have considered being a stay at home mom after my first but that thought quickly came and went. As much as I love being with my children, narcolepsy needs me to be doing more. If I did stay home, I would find any alone or downtime to rest.
As much as I want to stay in bed, I find I have more energy if I am on the go. For me, it’s all about keeping the brain active and alert. If I don’t keep my brain running, that’s when my sleepiness takes over.
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