How I Plan My Workday With Narcolepsy

By Kristyn Beecher, as told to Stephanie Watson

I've known my career path for as long as I can remember. When I was 2 or 3 years old, I would take my plastic Elmo chair, tape one of my mom's newspapers or magazines to the wall, and pretend I was reading the news from a teleprompter.

I was fortunate to go to an elementary school, middle school, and high school that all had broadcasting programs. My classmates and I would read the weather and the school news. By the time I went to college, it was all I wanted to do.

Shocking Myself Awake

I was a really sleepy kid, but my sleepiness didn't start to negatively affect me until high school. School started at 7:20 a.m. I'd be asleep on the bus on the way there. Then I'd sleep on the lunch table before school started. I'd sleep during every period of the day.

Whenever I'd feel sleepy, I would punch myself under the table to try to shock myself awake or stab myself in the leg with a pencil. Sometimes it worked. Other times, I'd have a sore leg and would still be sleepy. Fortunately, I was a really good student. Even when I slept through lessons, I'd score 100 on the test.

My friends would take pictures of me while I was sleeping. Instagram and Snapchat had just started at the time. Every time I opened one of these apps, I'd see a photo of myself, head back, fast asleep. I know my friends weren't posting my photos from a place of malice, but I do think it affected my self-esteem.

By the time I got to college, I really started to notice how different I was from other people. I missed so many events because I would come home from class and fall asleep. Since I didn't know what was going on, I thought there was something inherently wrong with me.

Asleep on the Job

My first job out of college was at a local TV station in Fort Myers, FL. I was producing the morning show and working from midnight to 9 a.m. While everyone around me got adjusted to the schedule, I never could.

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I would sleep at my desk. I'd go into the bathroom and take a nap. Sometimes I'd nap in my car. My sleepiness was affecting me physically and mentally, but it wasn't affecting me professionally. I was good at my job, and I got my show on the air every day.

That changed when I moved to the bigger Houston market in 2019. Every night there were shootings, fires, and car chases. I couldn't afford to fall asleep on the job. I was so stressed about falling asleep that I fell asleep even more.

One day when I was sleeping in the control room, my boss came in and tapped me on the shoulder. She said, "I saw you, Kristyn. Sleeping is unacceptable."

I came home crying to my mother. I said, "Mom, they're going to fire me. I need to see someone to get help."

Stay-Awake Strategies

My primary care doctor referred me to a sleep specialist. In January 2020, after living with symptoms for at least 11 years, I was finally diagnosed with narcolepsy.

The doctor gave me two types of medications, but they didn't work for me. I plan on working with a doctor to try other medications so that I can find one that works for me. In the meantime, I've tried other strategies.

For one thing, I got off the overnight shift and started working during the day. Sleeping at night and working during the day has helped me stay awake during my shifts.

I try to get as much sleep as possible at night by practicing good sleep hygiene. I keep my bedroom dark, go to bed at the same time every night, and I don't keep my phone next to the bed. I reserve my bed for sleep only. This trains my body to sleep while in bed, so I don't feel the urge to sleep as much when I'm not in bed.

During the day I try to be more active. I recently started roller skating. If I get up in the morning and skate, I find that I have more energy during the day.

Whenever I feel a wave of sleepiness coming over me at work, I get something cold to drink. The cold shocks my senses, and the motion of walking wakes me up.

I try not to lean on caffeine as a pick-me-up. Last year, I was downing caffeine pills with soda and giant tumblers of coffee. I was jumpy and shaky. My blood pressure was insanely high. I discovered that caffeine is not good for me.

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To Disclose, or Not to Disclose?

When I interviewed for my current job, I disclosed my narcolepsy. Disclosing isn't for everyone. It's an extremely personal decision, and it was one that I didn't make lightly. Even though it's illegal to discriminate against someone because of a disability, it still happens.

If you do disclose your condition to your boss, bring information about narcolepsy. A lot of people still don't understand the condition. Know that you have every right to ask for accommodations in the workplace. My station lets me take naps during the day.

Strong Support

I can't stress enough the importance of social support and peer support. A doctor can only do so much for you. Medicine can only do so much for you. There are so many people out there who can help bridge the gap and meet you where you are.

Narcolepsy can feel like an extremely isolating condition, but you aren’t alone. There are people out there who understand what you're going through. Just reading a story or seeing a video from somebody who has this condition can be what you need to get through the day.

When I was first diagnosed, I went on Instagram, typed in #narcolepsy, and started to follow organizations that help people with narcolepsy. I did the same thing on Facebook and Twitter. By doing that, I was able to find people who understood me.

Talking to people makes me feel validated. What I thought was a problem in myself is actually a medical condition. I know that I don't have to be embarrassed anymore.

Moving Forward

My hours are still crazy, and I still struggle to stay awake at work. I work in a uniquely challenging profession. At one point I thought, "I can't do this anymore. Clearly, this isn't what I'm meant to do."

I considered going back to school and trying something different, like public relations. But nothing makes me feel the way I do when I'm producing my show or when I'm pitching a story that I know is important.

I understand how critical my voice is in the newsroom -- the voice of not only a young black woman, but a young black woman who lives with a disability. I know that I represent so many people who, without me, wouldn't have representation. That knowledge gets me through even the toughest days.

WebMD Feature Reviewed by Neha Pathak, MD on July 27, 2021

Sources

Kristyn Beecher, patient, Houston.

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