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How I Talked About My Narcolepsy At Work

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Brooke Buckley - Blogs
By Brooke BuckleyAugust 09, 2021

I woke up on the first day of my new job with a nervous knot in my stomach but finally ready to get the day started. My night was filled with dreams about sleeping through my alarms.

Everyone gets this way before a big day, but I knew it wasn’t just a case of the first-day jitters. I put on my brown eyeshadow to make my blue eyes look a little brighter as I wondered how I was going to get through 8 hours without displaying the feeling that I haven’t slept in days.

I’m very open about my narcolepsy on social media, and I knew there was a chance that they would look me up before I started. I was hesitant to say anything at first, and I knew that this was the most critical time to learn my role.

How Do I Tell Someone I Just Met?

I quickly got comfortable in the welcoming environment, but after a few days I couldn’t stand the fact that I wasn’t open about my diagnosis yet at work. I battled myself about whether or not to talk to my mentor because there was a part of me that didn’t want anyone to see me differently. I also hadn’t yet established who I could trust with this fragile part of me. It was on one of my bad days that I finally decided to talk about it.

I thought to myself, “How do I just tell someone that I just met about this?” I had an idea of what to say because this often came up in my support groups, but I didn’t realize how hard it would actually be until that moment. I remember sitting down with my mentor in an empty office, away from everyone else.

My hands were sweating and my heart was racing because I was so anxious about the information that I was about to share. My voice started shaking as I was finally able to force out the words, “I just wanted to let you know that I have narcolepsy, and I need you to know how it affects me.”

I was nervous of his reaction, overcome by the fear of receiving another insincere response. I was already starting to regret saying anything. There was too much to my story that I felt no one could possibly understand. My head was spinning as I began to think about every time that my rare chronic illness was laughed at, brushed off, and not taken seriously.

To my complete surprise, he asked me, “What else can I do to help you?” I was left speechless by the thoughtfulness of this response -- something I’ve never been asked before. I went on to explain that some days are worse than others and all I ask is for patience, understanding, and reassurance.

Asking for Accommodations

I was relieved and comfortable enough after that to have the same conversation with my boss. I realized that the most important person there would never know what was on my mind if I didn’t speak up.

I explained the same thing to her, and that I was requesting an accommodation -- something that will make it easier for me to do my job. I wanted the opportunity to nap for 20 minutes once a day to recharge if I need it. I described that if I try to push through an episode my productivity is going to suffer and I’m going to feel worse. That 20-minute nap will give me the boost that I need to get through the rest of the day and perform my best.

I also explained that getting out of bed in the morning is especially hard for me because I experience frequent episodes of sleep paralysis and REM sleep when my alarms are going off. Luckily, she responded in a way that finally made me feel heard and I’m incredibly grateful for that. I felt that the honest conversation was appreciated. I didn’t want to look back and regret not saying anything, or for her say, “You should have told me sooner.”

I realize that many people are concerned and uncomfortable sharing their diagnosis at work. You may have had experiences that made you feel unheard, or maybe you’re worried you won’t be taken seriously. Maybe you want to keep work and personal life separate, and that’s OK if you feel that decision benefits you.

For me, I felt it was in my best interest to educate others about my situation. It’s important to communicate your needs and how your circumstances affect you. The decision for me to speak up benefits both sides because I know I can perform best with the right adjustments.

Tell Your Story

I encourage you to be your own best advocate. The ADA gives you the right to request an accommodation, and you don’t need to disclose your diagnosis to do so. Be clear about your needs. If you’re hesitant, try to weigh the pros and cons. It may be a conversation worth considering in order to improve your overall well-being.

I realized that my accommodation request seemed vague to someone on the outside, so I wanted to explain it myself. In stating the reasons why, your co-workers and boss may be more understanding when you use your own voice.

A healthy work environment should encourage you to ask for help and not make you spend valuable energy proving your condition to others just because it’s invisible. When we raise awareness, it makes others feel more confident in knowing they’re not alone.

 

 

Photo Credit: shironosov via Getty Images

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About the Author
Brooke Buckley

Brooke Buckley was diagnosed with narcolepsy in 2019 at age 22. After living with symptoms for about 7 years before receiving a proper diagnosis, she hopes to bring awareness to this misunderstood condition. Buckley is also a trained speaker and advocate with Project Sleep, and she enjoys playing tennis and hiking with her dog, Athena. Follow her on Instagram.

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