Julie is always excited to take on any new task. She approaches her work with enthusiasm, regardless of how big or small the assignment is. Her positive attitude towards her work is infectious, and she motivates the entire team to do their best. Her positive attitude and consistent smile are a great benefit to everyone around her.
My eyes filled with tears and my hands shook slightly accepting the award. Sure, its not like I won an oscar or the lottery, but as a person with narcolepsy, this was an incredible moment of personal and professional triumph. Thank you to Lara for nominating me! Congrats to Chris and Rachel who also won VIA Awards this quarter.
I’ve been working at City of Hope for 13 months and I absolutely love my job. When people ask me how I like Los Angeles, I find myself responding: “I love my job. And the weather.” In that order.
However, working full-time with narcolepsy has also been a journey for me and I’ve fought some of my own demons and insecurities this past year. I haven’t shared this journey with many people because I’m not so proud of how I handled everything. But here’s the honest truth.
In June 2014, I landed this full-time job as a writer at City of Hope, an amazing non-profit cancer research and care center in Los Angeles. The job was perfect for me and I really liked the people. At the same time, I was a bit scared to start working full-time in a traditional office setting, after a few years of doing part-time and contract work from home.
In an effort to fit in and prove myself, I didn’t mention my need to nap.
My boss and co-workers knew I had narcolepsy, as my narcolepsy advocacy had been discussed in my interviews and viewed as a strength in my application. However, after I secured the job, I quickly realized they didn’t know what my narcolepsy meant in a day-to-day practical sense…. And I didn’t bother to explain… for the first six months.
For six months, I fought napping, but really I was battling my own self-guilt and fears. It was a dark time, and looking back, I’m ashamed and sad that I let this go on for so long.
- I increased my use of stimulants on most days, instead of taking half what I was prescribed, I took the full amount, which wired me up, but also turned me into a less-humorous and not-so-nice version of myself.
- On the full stimulant dose, I luckily lost most of my appetite, so I didn’t need to eat too much during the day, as any moderate portion of food is a huge sleepiness trigger for me, even a healthy salad.
- I stocked up on gummy candy and usually indulged heavily between 3:30-4pm, in a ridiculous attempt to out-sugar my sleepiness.
- Despite my best tactics to avoid sleepiness, the heavy fog rolled in over my head daily, sometimes in meetings with my team. From my 10 years of experience living with sleep attacks, I’ve learned that although this feels other-worldly internally, this sleepiness is mostly invisible externally. Unfortunately, knowing this, I knew I could sit through this excruciating sleepiness, nod my head and take nonsensical notes, and get away with it – even though I’d have little to no recollection of chunks of those meetings.
- Worst case scenario, I would leave the office without saying where I was going with my car keys tucked under my folded arms. I’d take the elevator down to the building’s parking garage (in an almost drunken stupor, I’d be so beyond out of it) and hide in my car to nap.
- I began parking my car strategically in spots where I felt less visible. As time went by, I snuck away to my car more often, maybe 3-4 times a week. These naps were very short, about 8-15 minutes, but usually got my head out of the fog for a few more hours.
I cannot defend the length of time that it took me to begin talking openly about my need to nap. I realize this makes me a hypocrite, as I encourage others to live proudly and make accommodations for their symptoms to succeed in life, as opposed to living in denial and letting narcolepsy sneak up on us.
My only defense for myself is that I felt so incredibly lucky to have this great job and I didn’t want to do anything to rock the boat. Yet at the same time, in my free time, I was writing a textbook chapter on educational and employment accommodations for narcolepsy, so I knew the legal protections in place and felt that there was a strong precedent for receiving nap accommodations in the workplace.
Truthfully, I didn’t think my boss would react badly. Health issues were discussed with ease and empathy amongst team members. When NPR wanted to come to the office to interview me for a “Day in the Life of a person with narcolepsy” story – my boss, my boss’ boss and my boss’ boss’ boss all gave permission with enthusiasm and pride. My team has been supportive of all my outside narcolepsy efforts.
So why did it take me so long to ask for nap accommodations?
Ultimately, I was afraid to start what I perceived to be a “difficult conversation”.
That’s the pathetic truth.
I wish I could say that after six months, I woke up one day with clarity and marched straight into my boss’ office and asked for nap accommodations. But this story didn’t go like that either…