Patient Blogs | Sleep Disorders
Connecting With Others in the Narcolepsy Community
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Living with an invisible condition can make you feel like it’s hard to fit in -- or find people you can relate to that make you feel accepted the way you are. I’ll never forget how alone I felt in the beginning of my narcolepsy journey as I attempted to mask my symptoms with a smile.

I was fairly quiet at first because I didn’t want to seem like I was seeking attention and I didn’t want to be a burden to others. Society preaches reaching out to others, and old friends would say they’re there for me. Yet, when I talked about how I was feeling, they wouldn’t bother to check in. Instead, they talked about how dramatic I was if I would be open about it; but if I was quiet, they would stop inviting me to places because I was closed up emotionally. It was hard when friends in the health care field were learning how to talk to and care for patients but would look right through me when I became one.

I try to put a positive spin on everything in my life, but unfortunately, a lot of people with narcolepsy feel this way. You’re told that “other people have it worse,” so your illness doesn’t seem valid enough. You feel like you constantly have to prove your condition because it’s invisible, or because it’s so misunderstood that others just think we’re lazy or that it’s our fault. Even though I did have support from my family and a few friends, I wasn’t surrounding myself with the right group of people. It didn’t take long before I realized I had to find my own allies.

One of the most convenient things social media offers is the ability to connect with others across the globe. I did a simple search for “narcolepsy” on Facebook groups and requested to join a few. Members would openly ask questions or talk about their experiences, and it was wonderful to be a part of conversations that resonated with me. When people without narcolepsy say they understand, I know they’re trying to comfort me and say they know that this can be difficult. Still, it’s satisfying to connect with others who experience similar things as me, who actually live with it too, instead of just saying the insincere “I get tired too” phrase.

Once I saw how many people were so open about what they were going through and the battles they faced, I quickly became involved in advocacy. I searched for advocacy organizations and came across an organization called Project Sleep. The president and CEO, Julie, wrote a memoir of her journey with narcolepsy. I knew ever since I read her book and listened to her moving speeches that she was a powerful voice for the community. The way she delivered her words with such elegance and passion inspired me to follow in her footsteps.

After applying for Project Sleep’s “Rising Voices of Narcolepsy” program, which trains and empowers patient advocates to share their stories, I learned how to use my own voice to be an advocate for myself and the sleep community. I’m proud to say that I now have the honor of Julie being my mentor, and I’ve bonded with others that share my enthusiasm for bringing awareness to this misunderstood condition.

In addition to Rising Voices of Narcolepsy and Facebook groups, I also became familiar with other organizations. Narcolepsy Network holds virtual support groups, which is great to be able to see and talk to the people that you’ve become familiar with.

I can assure you that you are welcomed in the sleep community if you’re hesitant. Don’t be afraid to ask for help or connect with others going through similar experiences. Every person has felt alone at some point in their journey, but the support and bonds that you’ll form are incredible. You don’t have to go through this alone -- all it takes is a bit of courage, and you won’t regret it.

 

 

Photo Credit: Westend61 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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