IMPACT OF NARCOLEPSY TYPE 1 (NT1)

NT1 can make every day feel like a trade-off between what you want to do and what you have to do

NT1 can make life feel exhausting and unpredictable. It brings a mix of challenges, including excessive daytime sleepiness (EDS), muscle weakness (cataplexy), disrupted nighttime sleep, sleep paralysis, and vivid, dreamlike experiences when falling asleep or waking (also known as hypnagogic and hypnopompic episodes), all of which can weigh heavily on your physical and emotional well-being. It may feel like your day is consumed by sleeping or keeping up with responsibilities, and fitting in a self-care moment or social activity can feel impossible. It's important to understand that NT1 is not your fault. It's the result of a missing brain chemical called orexin, which you can learn more about here.

Because no one knows your NT1 like you do, when you’re not managing your condition, you’re explaining it. From missing your friend’s birthday, to falling behind at school or work, NT1 can feel isolating and embarrassing.

Hear about how NT1 impacts everyone differently

Having narcolepsy type 1 for me feels a lot like being a deflated basketball. When the ball is deflated, can't really use it. Just like when you're feeling tired and you need a nap. So I literally live my life by a clock. I'm constantly just calculating how much time do I have to allocate before I become tired? I cannot stress enough that giving myself enough cushion time for a nap is imperative for me, just to ensure that I can enjoy the things that I want to enjoy without a fear of experiencing an episode in public.

My name is Justice. I have narcolepsy type 1. I definitely grew up as an athletic family, but I started noticing at specific times in the day I would pass out like a light bulb and definitely because I was a high-functioning human, a high achiever, excelled athletically.

People just chalked it up as “Justice is tired, enjoys a good nap” having narcolepsy type 1. For me, I just kind of just lose all control, honestly. So one of my symptoms that I deal with, regardless of the medication, definitely it's going to be kind of like this balance between the dream state and reality. I call it sleepy talk, where my brain literally thinks that I am still awake, but I am technically asleep.

So there are certain things I try to incorporate in my life to make my life even easier in dealing with having narcolepsy type 1. I call them little tricks. One of the things are sunglasses. If I do feel myself getting tired, I put my sunglasses on and nobody even knows that I'm asleep in public. People just don't get it and they don't understand.

And then you feel like a spectacle.

I try to avoid my body shutting down and passing out by taking a nap gap. It's 11 to 1. I'm going to be shut down.

If you do have narcolepsy type 1 and you are a collegiate athlete, you can do it. Just because you have narcolepsy type 1 doesn't mean you can't play sports at a high level and things of that nature. My teammates and my coaches have been a great support system. I have been incredibly lucky to be surrounded by people who can understand, who can advocate.

I don't have a fear of missing out, so I still will participate and go out. It's important to surround yourself with people who can advocate and protect you in those situations if you do experience an episode. I preach to people constantly how important communication is, how important it is to find a great support system when you can, but also just being open and honest about what you need in those moments, and not being fearful that somebody is going to misunderstand you.

Justice’s story

Justice shares how it takes careful planning and knowing her body's schedule to be a high-functioning collegiate athlete with narcolepsy type 1. By being open and inviting people in who understand that her condition is a part of who she is, she's able to combat the stigma of living with this disease.

I really beat myself up over dropping my phones and breaking them. So I call it the cataplexy tax. Every cell phone I've ever owned, I have dropped. Narcolepsy type one is a rare neurological disorder that aﬀects your wake and sleep cycles. My narcolepsy type one comes with something called brain fog. The way I would describe it would be like a hazy feeling.

Not feeling totally awake. Not feeling 100% aware. Kind of living in a daze. My name is Casey. I have narcolepsy type one. If I had to guess when my symptoms of narcolepsy type one started, I would say I was probably 13 or 14. I was always tired or sleepy during the day, but I was always told it was just contributed to me being a teenager.

I was diagnosed when I was 17 years old, but I was never told that I was diagnosed. I ﬁnally found out about it when I was 32. I was putting together a medical record book for my doctors. I stumbled across the word narcolepsy. That was a pretty big surprise. At least now I had a word to describe my feelings.

So, orexin is in charge of your sleep wake cycles. It's a neuropeptide. That's what people with narcolepsy type one with cataplexy are deﬁcient in. Even though I do take medications, I still experience excessive daytime sleepiness where most days I have to take a nap at some point, I still experience just that sleepiness feeling every day. It feels like somebody could tell me something, and unless I have it written down, I'm not gonna remember what they said.

Having a visual cue of being able to see what I need to do so I can stay on track. I also take cold plunges and ice baths, cold water washing my face during the day to kind of help wake me up. But if I feel a migraine coming on, that's usually my trigger and it tells me that I need to go take a nap.

I was accused of being an alcoholic. That's why they thought I could not wake up in the mornings. I felt a lot of shame from all the jobs that I had lost. My family shamed me about it. Everybody kept telling me, why can't you just wake up in the mornings? But nobody actually knew how hard I was trying. After I found my diagnosis of narcolepsy type one with cataplexy, I went online and I had started attending these support group meetings.

It's good to see everybody again this week. I was listening to these stories and it felt like they were talking about my life. It really gave me a sense of belonging, and It ﬁnally felt like I found my community and a place that I actually belonged in. Being on my feet and being able to walk around and be outside and get some fresh air and the blood ﬂowing always usually helps.

Facilitating group meetings makes me very happy when people ﬁnd our meetings, because it feels like we're adding another family member. Because with narcolepsy type one with cataplexy, you absolutely need a support system. And having people that understand and have the same lived and shared experiences is an invaluable asset. Narcolepsy type one has taken everything from me and now I'm rebuilding.

I've been homeless. I've lived on the street. I'm currently on a friend's couch right now. You know, my goals are to ﬁnd a job or get back into school and gain my independence back. Giving up is not an option. Even though there's been a lot of days where you think about it. Narcolepsy is incredibly diﬃcult to live with. I was in a really deep, dark place for a long time, and taking the ﬁrst step by going to the support group meetings was a huge step for me.

It's helped me ﬁnd a great sense of support. I can't imagine my life without it anymore.

Casey's story

Casey shares his story about how NT1 slowly took him down a path of isolation. After years of learning about NT1 and working with his healthcare team, he began to reconnect with his community by leading a support group where he works to help others who are living with NT1.

TARA: My journey was a long journey. I always felt like something was off. I was misdiagnosed with a lot of things growing up. My parents just told me I had nightmares. But it ended up it was actually sleep paralysis and hallucinations. And, I then also had trouble sleeping. Lost a lot of friends, too, and missed out on a lot of things because of my sleepiness.

I was seeing a doctor and he was kind of concerned and then sent me to a sleep specialist, and that's when I finally got diagnosed.

I'm Tara and I have narcolepsy type 1. I am a pediatric sleep coach, just started my own business. It is hard to do things with narcolepsy type 1, so I make sure to break tasks up and not do the same thing for too long. So like I'll work for like an hour, but then I'll go do laundry or clean, do another task to kind of help, like switch things up and like wake up.

I am taking medication right now. I take nighttime and daytime medication. They do help, but I still do have symptoms. Like, I'm still tired every day. And that doesn't go away. I've always had cataplexy, but I was always told I was just clumsy because I drop things. It's usually when I'm stressed, my hands give out. So I like to crochet and do pottery and painting because it helps relieve stress, which is a huge trigger for my symptoms.

And knowing about orexin, I mean like knowing there's an underlying cause for NT1, I feel like, now, it isn't my fault. And it was not just in my head.

JOEY: “If you could only eat one food and that's all. What would it be and why?”

TARA: Joey and I, when we first met, he really impressed me. He said something along the lines like that must be difficult for you. He didn't just be like, oh, you can fall asleep all the time, right?

JOEY: On a day to day basis, I help Tara in pretty much any way that I can think of. Mostly it's a smaller task here and there that makes a world of difference to her.

TARA: To have a successful date night, we have to eat earlier rather than later just because I get tired.

TARA: “I’m gonna steal some of yours.”

JOEY: “I’m gonna steal some of yours.”

TARA: I need someone who is very empathetic and so, like, having Joey. He's been great. There are people who care and are empathetic. It's really nice because I never really thought that I would get that. Narcolepsy type 1—it definitely took things from me, but it also gave me a lot of things. Starting my own business has really helped me in a lot of ways.

Working in the medical field, I just really got tired of having to advocate for myself and being told I had to do it a certain way, when that way didn't work for me. It was sucking the life out of me and now being my own boss, because I can take breaks when I need to, I can really manage my narcolepsy symptoms.

JOEY: Whether it's making copies of her pamphlets, like I drive her to make those copies, any way that I can save her a little bit of energy, make her a little bit more comfortable. It's little things like that. That's important to communicate.

TARA: My life is going to be different than what I expected it to be, but I want to educate as much as possible, share my story, like talk about it as much as I can because most people don't really know what it is. It's not talked about enough and I just want others to know they're not alone.

Tara's story

Tara shares what it takes to have her own business and maintain a healthy relationship with her partner, Joey, while living with narcolepsy type 1. Having people who care and are empathetic has helped her in many ways, and made her realize she is not alone with her disease.

Myths vs facts

Movies and TV shows may portray narcolepsy as suddenly collapsing into sleep, but in reality, symptoms vary between individuals, making everyone's experience with narcolepsy unique. Let’s dive into some popular misconceptions about the condition.

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Fact: There are 2 types of narcolepsy, type 1 and type 2. While both cause EDS, individuals with NT1 also experience cataplexy and a loss of orexin.

Fact: NT1 includes a range of symptoms beyond just those that impact sleep and wakefulness. It also includes symptoms that impact ability to focus, muscle control, mood, and more.

Fact: Narcolepsy type 1 is a serious neurological condition caused by loss of a brain chemical known as orexin.

QUICK POLL

See how long others in the community have been managing NT1. When were you diagnosed?

Results:

Not yet diagnosed

Less than a year ago

1-3 years ago

Over 3 years ago

This is an informal poll for informational purposes only and may not reflect current prevalence data.

The physical and emotional effects of NT1 can make every day feel like a challenge

Despite misconceptions, NT1 has nothing to do with laziness. It's the result of a missing brain chemical called orexin. Let's take a look at the wide range of impact it can have on daily life.

NT1 can manifest in many different ways for each individual

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EDS is characterized by consistent, overwhelming daytime sleepiness, which NT1 patients have said can make you feel like you’re suspended between sleep and wakefulness or like you’re swimming through mud.

A sudden muscle weakness triggered by strong emotional responses like laughter or anger; it can range from a partial attack, like drooping facial muscles, to a full-body attack, like falling to the ground.

Fragmented or disturbed sleep that leaves you feeling never fully rested, which many people with NT1 have described as almost like you are sleeping with your eyes open.

These can occur when falling asleep or waking up and can be frightening and confusing.

Being unable to move or speak when falling asleep or waking up despite being conscious.

Difficulty with attention or executive function that can make it tough to complete tasks.

Simple tasks like cooking a meal or running an errand may require intense planning around sleep episodes. NT1 can get in the way of your most important responsibilities; for example, almost 61% of people with NT1 (943 were surveyed) said it was highly challenging to perform household duties and care for their family.

When living with NT1, it can feel like your day is consumed by sleeping and trying to stay awake. In fact, 57% out of 973 who were surveyed said their NT1 symptoms limited them from exercising or playing sports.

Of 254 adults who reported they had been diagnosed with NT1 or NT2, the majority reported that narcolepsy made their social lives and entering romantic relationships harder.

Did you know?

According to a survey of 1338 people with NT1, over 90% reported experiencing some daytime sleepiness, despite disease management. Talk to your doctor about your symptoms.

Man with narcolepsy type 1 smiling outdoors

My symptoms made it hard to keep up at work. I felt a lot of shame over the years.

—CASEY, living with NT1

NT1 doesn’t just affect everyday choices. Its impact can make big life decisions feel more daunting, like getting your degree, navigating a career, or even starting a family.

This is what it takes to live with NT1

Get more exclusive stories from real patients delivered right to your inbox. If you have questions or concerns about NT1, its symptoms, and/or its impact, please talk to your healthcare professional.

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IMPACT OF NARCOLEPSY TYPE 1 (NT1)

NT1 can make every day feel like a trade-off between what you want to do and what you have to do