What It's Like To Be Diagnosed With Narcolepsy
Narcolepsy is a serious neurological disorder that affects the brain’s ability to regulate sleep-wake cycles. This can cause a person to fall asleep suddenly, even in the middle of an activity—which is called “sleep attack.” It also causes them to experience other symptoms such as muscle weakness and hallucinations when they’re awake. Unfortunately, many people don’t know what narcolepsy is and don’t understand why it happens or how best to treat it. Here are some things you should know if you’ve been diagnosed with narcolepsy:
it starts with excessive daytime sleepiness.
You’re not sure why, but suddenly you want to sleep all the time. It doesn’t matter what time of day or where you are—you just feel like your body is screaming at you to lie down and take a nap. If this sounds familiar, then it could be that you have narcolepsy.
Narcolepsy is defined as excessive daytime sleepiness (EDS) and can affect both children and adults. There are two main types of narcolepsy: childhood onset and adult onset. In both cases, symptoms include EDS along with cataplexy (a sudden loss of muscle control), hallucinations upon waking from sleep, hypnagogic hallucinations (dreamlike experiences at sleep onset), and sleep paralysis (being unable to move after waking from REM sleep).
sometimes you can’t move.
When you’re diagnosed, you may be told it would be a good idea to avoid driving. You might also hear that with proper treatment, you should be able to lead a normal life. But what does that mean?
Well, if you’re like me and have narcolepsy, it means being exhausted all the time—but also still having to do whatever else needs doing. It’s exhausting! My brain doesn’t always keep up with its own demands for sleepiness; sometimes I’ll feel like I’m going to fall asleep at any moment—even when I’m engaged in normal activities like reading or watching TV. Sometimes I can’t move for fear of falling over (this is called cataplexy). And some days are just really hard because my brain isn’t working properly at all (this is called EDS). So even though narcolepsy isn’t always physically debilitating as long as you keep up your treatment regimen (which usually involves taking medication every day), sometimes there are consequences: things get missed because your body hasn’t gotten enough rest; there’s less energy available for work or school; relationships suffer because everyone around assumes there’s something wrong on your end when they see how tired and withdrawn you’ve become…
it has nothing to do with being lazy.
Narcolepsy is a neurological disorder where your brain doesn’t regulate sleep cycles properly. It’s not caused by laziness, depression, or any other factors that can be controlled. You can’t “decide” to get narcolepsy and make it go away when you want to do something fun; it’s not an illness that goes away just because you decide you would rather be up all night than asleep.
It’s also worth mentioning that narcolepsy is not caused by sleep apnea (a condition where sufferers’ throats close up and block their airways while they’re sleeping) or insomnia (inability to fall asleep). These conditions may exist alongside narcolepsy in some people, but they aren’t related.
you can’t predict when an attack will happen.
For me, the most difficult thing about narcolepsy is that I can’t predict when an attack will happen. An episode could come on at any time and take me by surprise—when I’m in class, driving or walking down the street, even when I’m with friends. The only guarantee is that it won’t happen when I’m sleeping (because everyone knows that you can’t sleep while someone else is sleeping).
When a cataplexy attack strikes without warning, it often takes place during times of stress or exhaustion. The first time this happened to me was during finals week of my freshman year at college. On top of being stressed out about exams and papers due the next day, I hadn’t gotten enough sleep because of constant studying all night long. To make matters worse, one of my professors was giving away free coffee to students who showed up early for class (which meant showing up at 7 am). So after staying up all night studying with no sleep whatsoever and then receiving free coffee from my favorite professor—who also happens to be an awesome guy—I got hit with an unexpected cataplexy attack as soon as he walked into class! It’s ironic how hard you work for something good happening only for it to backfire in your face later on…
you really did just see that.
You just saw that. Narcolepsy is a serious neurological disorder, not a psychological disorder or a lifestyle choice or a sign of laziness or weakness. You may be asking yourself what it’s like to be diagnosed with narcolepsy: if you’re like most people who are newly diagnosed, you’ll probably want to know what to expect next—and whether there are ways you can help manage your symptoms.
In this article, we’ll talk about all those questions and more so that you can feel prepared for whatever comes next after receiving your diagnosis!
there’s nothing to be afraid of.
Narcolepsy is not contagious. It is not a mental illness, and it’s not fatal. You are not crazy, lazy, or any other bad word you may be afraid to use to describe yourself for fear of being judged by your peers or loved ones. I wish everyone who has been diagnosed could have told me all this when I was new to the disease—that there’s nothing to be afraid of in having narcolepsy!
For me personally, the hardest part about my diagnosis was the stigma surrounding it—the idea that if people knew I had narcolepsy they’d think less of me and treat me differently than they did before my diagnosis. This turned out not to be true at all: once people knew about my condition (and learned how common it was), most were surprised by how little impact it had on their lives and opinions of me as an individual.
the cataplexy is the part that can be the most terrifying—and the hardest one to explain.
If you’ve never heard of cataplexy, it’s the sudden loss of muscle tone in response to strong emotions, like laughter or surprise. It’s not a seizure and it’s not a sleep disorder (though it can happen while sleeping). Cataplexy isn’t weakness—it happens after years of struggling with narcolepsy symptoms, so don’t joke about it!
Cataplexy is one of the hardest parts of narcolepsy to explain because as soon as someone hears the word “cat,” they’ll think “catatonia” and have this mental image of someone who can’t move or talk. But that’s not what cataplexy feels like at all; for most people who experience this symptom, it feels more like suddenly losing control over their muscles for just a moment—sometimes for just seconds at a time—and then coming back to themselves again.
it gets in the way of your love life.
The thing is, narcolepsy can get in the way of your love life. You might have to explain it to potential partners, and that can be hard on both parties.
On the one hand, you’re trying to be honest about the condition you live with every day; on the other hand, you don’t want people thinking that’s all there is to your personality. You don’t want them assuming that because you suffer from narcolepsy (and because it has affected every aspect of your life), everything must be about narcolepsy for you—and thus nothing else about them matters at all. It’s an awkward situation for everyone involved.
We’ve already covered how difficult dating can be when there’s no such thing as “normal” anymore—but dating while living with a chronic illness adds another layer of anxiety and self-consciousness onto top of everything else!
Narcolepsy is a serious neurological disorder
Narcolepsy is a serious neurological disorder characterized by short daytime naps (called “cataplexy”), sleep paralysis, and hypnagogic hallucinations. The disease is not a mental illness, nor is it a result of poor sleep hygiene. For example, it’s not caused by poor diet or too much sugar consumption; nor does it come from being raised badly as a child (like some might think). Narcolepsy also doesn’t develop because someone who has narcolepsy drinks too much caffeine; this is just an old myth that needs to be put to rest.
The symptoms of narcolepsy can vary from individual to individual but generally fall into two categories: cataplexy and excessive daytime sleepiness (EDS). Cataplexy involves sudden loss of muscle tone without warning or falling asleep and may include weakness in the knees or dropping objects from your hand. EDS refers to feeling tired all day long even after getting enough sleep at night—this may include frequent napping during the day despite being fully rested when you go to bed at night!
So there you have it. Narcolepsy is a serious disorder that can affect your life in many ways. It’s not something to take lightly, and you shouldn’t be afraid of it either. It might not be easy to deal with at first, but there are plenty of resources out there to help you on your journey towards better health and understanding.