Patient Blogs | Sleep Disorders
Opening Up About a Narcolepsy Diagnosis
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If you’ve been newly diagnosed with narcolepsy, I’m sure you had a lot of questions after attempting to wrap your head around the situation. You probably wondered how this is going to affect you in many ways moving forward. If you’re anything like me, you were probably debating, “I want to let people know, but how do I approach it and what will they think?”

Right after I was diagnosed, I remember having this debate with myself. It was like I had those cartoon-looking devils and angels on my shoulder arguing about what to do. I was in college, so I felt like all my symptoms of sleepiness were finally validated by a real reason but telling my professors could backfire. Maybe they would be skeptical and think I’m just lazy and looking for an excuse to get extensions on assignments. Maybe they would brush it off and tell me to suck it up because they think it’s really not that bad. I was afraid of the backlash from some of my college friends, saying they wish they could nap when they want because they’re tired too.

The day of my diagnosis, it was easy for me to tell my close family and my boyfriend. But until I understood my condition better and knew that I would need to find a treatment that worked, I was hesitant to talk to my friends. A month after the fact when I returned to college for the fall semester, I told the first person that wasn’t a part of my inner circle: the head of disability services. We were discussing accommodations, and he advised that it is totally up to me if I want to tell my professors. I remember him saying, “Given your unique diagnosis, it may be in your best interest to have a personal conversation with them so they know what you’re really up against.” If they see that I’m putting my best foot forward despite the circumstances, that goes a long way professionally and in a work environment as well.

In my personal life, if the topic comes up in casual conversation and the opportunity presents itself, then I will talk about it if I feel comfortable. For example, many people comment on the spoon-shaped jewelry that I always wear. When they ask me why I like spoons so much, I explain the spoon theory to them. I tell them briefly that the theory is when people with chronic illness measure their energy in a limited number of “spoons,” and that each daily task costs a certain number of spoons. This is always a good ice breaker if I want to incorporate narcolepsy, but you also don’t need to talk about all the details if you’re not comfortable.

One thing that I was not prepared for at first when I started to open up about my narcolepsy is how blunt people can be in their responses. They would throw out the classic, “So you just fall asleep randomly?” Or they’d ask, “Do you ever just collapse out of nowhere?” I didn’t know how to take that at first, but 2 and 1 /2 years later, I’ve learned to become an expert at giving my own narcolepsy “elevator pitch.”

Another important thing to keep in mind is to use awareness days to your advantage. Narcolepsy is widely recognized across social media on World Narcolepsy Day in September, National Sleep Awareness Week and World Sleep Day, both in March, and Rare Disease Day in February. If you want to be open about your diagnosis on social media, those are the perfect opportunities to raise awareness. The first time I openly talked about my narcolepsy on social media was on the 1-year anniversary of my diagnosis. I’ve made great connections, and I’m now way more comfortable sharing than I was before. You can inspire others so much by sharing your story.

I’ve found that the more I talk about it, the easier it gets as I become more comfortable. Sharing your experience doesn’t mean you’re making an excuse, and you don’t owe anyone a reason for anything involving your diagnosis. Most importantly, there are no rules when it comes to speaking up. What you decide to share is completely up to you, and it’s whatever you feel comfortable with.

 

 

Photo Credit: Tom Werner / DigitalVision via Getty Images

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Brooke Buckley

Brooke Buckley

Diagnosed since 2019

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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