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5 Things I Needed to Hear From Other People With Narcolepsy

Learning the power of hearing others' stories

six beautiful women with narcolepsy

Soothing music filled my ears, guiding my attention to that place where nothing else exists but the here and the now.  A feminine voice lilted over the hypnotic tones, strong emotions lurking just under the surface. But she wasn’t leading me into a guided meditation, she was baring her soul.  Instead of feeling detachment, I was on the verge of tears because I related to her words so well.

Recently, Project Sleep released a new series of videos featuring people with narcolepsy sharing their stories of living with this often misunderstood neurological condition. Having lived with narcolepsy for as long as I can remember myself, I didn’t think there was much I could learn from some video clips. Yet, once I started watching the series, I couldn’t stop. I found myself reflecting on my own experience from new angles.

 Here are my top 5 quotes from this new video series that you shouldn’t miss.

“Sometimes I woke up in bed with this feeling that there was someone in the room, someone who wanted to do something really horrible to me, and I would find that I couldn’t move at all.”  – Lisa

When I heard Lisa speak about “Meeting the Shadowman,” I felt an incredible sense of relief.  Hearing her describe being afraid to go to sleep and believing her house was haunted was so validating.  Both of us experience hypnogogic and hypnopompic hallucinations, which are visual, auditory, or tactile hallucinations upon falling asleep and waking up.  These are often accompanied by sleep paralysis, meaning that while feeling like someone is intruding, we are unable to move or cry out. 

Learn more about Lisa’s story here

Part of me always believed that I had invented the terrifying creatures that visited me in the night; or that my mind was “dark and twisted” and that my creativity didn’t know where to stop. Now that I am aware that these experiences are symptoms of narcolepsy, I am skeptical when I hear something near bedtime, and usually suspect that it’s a hypnagogic hallucination.  But still, after the encounter is over, I have to get out of bed and check my surroundings to try to determine if the experience was real.  Unfortunately, it is often impossible to tell if it actually happened or if it was a dream. 

I started withdrawing from social situations, I stopped doing things one by one, until I found myself at home alone not doing much of anything.”   –Shannon

Shannon’s story resonated with me more than I expected.  Even though I haven’t experienced the “before and after” narcolepsy contrast, hearing her explain how narcolepsy took away her ability to do things she had enjoyed before was a relief.  It reminded me that I am not lazy, and I didn’t choose to be an inactive kid growing up. It wasn’t that I didn’t have ambition; as a kid I dreamed of becoming a surgeon. A doctor bluntly told me that it wasn’t realistic, the same way Shannon’s doctor told her she wouldn’t be a pilot.

Hear more from Shannon here

Shannon also received some great advice: “Stop focusing on what you can’t do anymore. You need to figure out who you are. You need to bloom where you are at.” Even though she had to give up on one of her dreams, she is doing everything she can to still live an amazing life. I eventually came to this same realization. I had to stop comparing myself to everyone who is not shouldering an invisible illness. And I needed to accept myself exactly as I am.  

“I learned to be really patient with people when it comes to understanding narcolepsy. After all, it is hard to understand an invisible illness.” – Estefy

I’ve always thought of myself as a pretty good communicator.  In high school and college, I held leadership roles and earned As on presentations and speeches, so it baffles me when I’m not able to explain narcolepsy effectively.  It turns out, it’s not just me!  Knowing that Estefy, who is highly intelligent and articulate, has this same struggle, helps me feel like I am not alone.  Other people with narcolepsy struggle to get their family, friends, and coworkers to understand narcolepsy. 

Estefy explains more here

For example, excessive daytime sleepiness is the most well-known symptom of narcolepsy. Although everyone knows what it feels like to be “sleepy,” it is not easy to express how my sleepiness compares to someone who doesn’t have narcolepsy.

On the other hand, cataplexy is a lesser known, but serious symptom of type 1 narcolepsy. Cataplexy is striking, sudden episodes of muscle weakness usually triggered by emotions such as laughter, exhilaration, surprise, or anger. It is difficult to convey what it’s like to have cataplexy and we wouldn’t want those we love to experience it.  Even though we can try to explain the physical symptoms, the pressure these symptoms can put on our minds and our emotional states is not easy to explain. 

None of us want to discuss our symptoms all the time, but we appreciate when people ask us questions about narcolepsy instead of just assuming that because they’ve seen Rat Race, they understand what we are going through.

“My diagnosis gave me the opportunity to reconnect with my body.” -Michelle

Connecting with my body has always been a struggle since I have seen it as this thing that fails me, that I can’t trust, and that I have to lug around as it defies my wishes.  I have fought with my body for years.  But, having narcolepsy eventually forced me to stop fighting, and find that connection.  Medical treatment for sleepiness is not as simple as it sounds.  There is no cure for narcolepsy at this time.  Various medications can improve symptoms and may help people with narcolepsy get through the day, but many of us look for added approaches to further address our symptoms. 

See more of Michelle’s experience here

Over nearly 20 years, I have been on a variety of medications for wakefulness and restful sleep. But at various points in my life, medication hasn’t been part of my symptom management plan. That means I have learned other coping strategies and listened to my body.  No one can decide for a person with narcolepsy what treatment will best fit their lifestyle, and one treatment approach may not be suitable over the whole lifespan. Some of the lifestyle adjustments that may help us improve our health are not so different from what the general population may be doing- eating healthy, minimizing stress, moving our bodies, and keeping a positive attitude. This doesn’t mean we all have the same needs; every human body is different so it’s up to each of us to find what works best for us.

“By speaking up and educating others, you can raise awareness and erase that stigma.” –Grisel

One of my biggest takeaways after binge watching the entire series of stories was something that I already knew in my heart: living with narcolepsy demands more than managing symptoms.  It is a social experience involving cultural misconceptions, Hollywood portrayals, and lots of people – families, friends, partners, medical staff, and other people with narcolepsy.

Learn more from Grisel here

It may take years for a person to come to the realization that there is a narcolepsy community out there, supporting each other and working to make improvements. Some people find support groups in their hometowns, others look online, but we can all reach out and find people with narcolepsy to talk to. And for those of us feeling ready and able, there are opportunities like Project Sleep’s Rising Voices of Narcolepsy program to raise our voices to help re-define the social experience of living with narcolepsy. I participated in the program last year and have found it is so rewarding when other people with or without narcolepsy read my words and respond or thank me for sharing my experience.

Telling my story is difficult for me, but I have been inspired by the very women in these videos to continue.  We have the power to change how narcolepsy is perceived, on our own terms and in our own words. One story at a time.

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