我以为自己只是懒惰：被误读十九年的发作性睡病与睡眠障碍真相

I was one of those overachiever kids. 12 things going at once, already dreaming of changing the world. And I was so excited to go to summer school at Yale when I was 16. I didn't say I was cool. (Laughter) The classes were tough and thought-provoking. But that's when something strange started happening to me. I'd be sitting in class, completely engaged, when suddenly, a fog rolled in. My thoughts fuzzed, my senses dulled, the world blurred, like someone was slowly turning a dimmer switch on my brain. I'd pinch my thigh, tap my foot, anything to fight this overwhelming urge to sleep. Once I bit my tongue so hard it bled. And then the thought would hit me like a hammer. "If I don't go to sleep right now, I'm going to die." So somehow, quietly, I'd excuse myself, slip into a bathroom stall, lean my head against the wall and fall asleep.

When I told my family doctor, she said, "You're busy. Busy people are tired." It felt dismissive, but also like some secret initiation into adulthood. I had big dreams, a lot to accomplish, so I figured I just had to get better at being awake.

When I started working in professional politics, exhaustion was a badge of honor. The later you stayed up, the more coffee you drank, the more worthy you felt. Society convinced us that if we were tired, we were doing it right. In 2008, I joined the Obama Advance team, the people responsible for everything from logistics to aesthetics on the campaign. But the thing about Advance, you're in a new city every four to six days, regularly pulling all-nighters, on behalf of the future president of the United States. The stakes were high, it was fast-paced, everyone was exhausted. I was surrounded by the best, the brightest and the busiest. But I never saw them sneaking into the bathroom to nap like I did. (Laughter) I thought I must be lazy, that I lacked the willpower everyone else seemed to have. And underneath all that drive, I felt utterly alone in my inability to keep up.

As the years passed, I kept bringing up my sleepiness to doctors who kept pushing the same glossy handouts on improving my sleep hygiene. My gut knew something else was going on. And then came the dreams. I'd wake up frozen in bed, convinced something terrifying was in the room. I could see it, but I couldn't move or scream. One doctor said it was just me manifesting stress from my job. One night I woke to a child whispering, "Can I hold your hand?" The next day I saged my entire bedroom, like, it never crossed my mind I might have a neurological disorder. (Laughter)

At 35, I hit my wall. I could fall asleep, but I couldn't stay asleep. I was awake most of the night, falling back asleep just before my alarm went off. Most days I felt like a lunatic zombie, barely holding it together. I would drop things suddenly, in the middle of stressful meetings at work. At my wit's end, I begged my general practitioner for help. She ordered an at-home sleep test, which came back negative for sleep apnea. And I was told, "You're fine." I marched back into her office with a full defense that something else was wrong. She stopped me mid-sentence and admitted, "We're officially beyond both our knowledge of sleep."

I was referred to a sleep specialist, which is a doctor trained to diagnose and treat sleep disorders. And two months later, after 19 years of symptoms, shame and self-doubt, I was diagnosed with narcolepsy, a chronic neurological condition of the brain's sleep-wake cycle. And before you say, "19 years, that's extreme." It's not. The average diagnosis period for narcolepsy is eight to 15 years. And that's because in medical schools worldwide, doctors receive, on average, less than three hours of education on sleep total across their entire medical training. No wonder no doctor thought my sleepiness was an issue or asked any follow-up questions.

Narcolepsy has five distinct symptoms that, on their own, seem completely unrelated. Excessive sleepiness that can feel like you've been awake for 48 hours, even after a full night’s rest: nighttime hallucinations, sleep paralysis, disrupted sleep and sometimes cataplexy -- a loss of muscle tone with strong emotions. Which is why I don't have slides in this talk, because I was afraid I would drop the remote. I never walked into a doctor’s office and listed them all together because there was no way for me to know they belonged to the same story. The same way there was no way for me to know my tired was different.

But for one in five of us, our tired is different. While narcolepsy might be rare, it’s estimated [that] 20 percent of the population has a sleep disorder -- everything from sleep apnea to chronic insomnia, restless leg syndrome and other conditions that quietly steal rest. And hundreds of millions of people worldwide are walking around exhausted, untreated and thinking it’s normal to feel this way. We've been taught to push through exhaustion instead of asking about it. This isn't an epidemic of laziness. It's a failure of diagnosis. We dismiss people with sleep disorders all the time. We think sleep apnea only affects middle-aged men with thick necks and square jaws. (Laughter) But it can affect anyone, at any age and any size.

Now, thankfully, we've started to recognize that sleep is vital. One of the most important things you can do for your physical or mental health. When you get enough sleep, your body performs quiet miracles. Repairing cells, balancing hormones, clearing toxins from your brain. Sleep is where creativity is born, memories are filed and the subconscious gets to color outside the lines. Sleep is the engine of productivity.

Now good sleep hygiene matters. But for the one in five of us living with a sleep disorder, sleep hygiene alone isn't a cure. No perfect bedtime routine, no weighted blanket, no lavender spray on your pillow will keep your airway open at night. Because when the problem is neurological, structural or biochemical, without medical intervention, your body pays the price. Aside from brain fog, loss of productivity and the dangers of drowsy driving, over time, when sleep disorders go undiagnosed, they silently break the body down from the inside out, fueling inflammation, accelerating aging, driving insulin resistance and raising the risk of heart attack, stroke [and] even Alzheimer’s. This isn't just exhaustion. It’s a slow erosion of health, focus and longevity.

But it's also an identity issue. I didn't become a whole person until I was diagnosed with narcolepsy. Before that, I was working or sleeping. There was nothing in between. But with treatment, the world came alive to me. Colors got brighter, [and] I felt a full range of emotions. I started having hobbies. (Laughter) I found my voice. Before my narcolepsy diagnosis, I didn't think I was creative. In the last eight years of treatment, I've written two pilot scripts, [written] and published a whole book, became a keynote speaker and had articles published in national outlets. Before my diagnosis, my world felt extraordinarily limited. Now there's no limit to my capacity.

So consider this your activation, your permission slip, your reclamation, your literal wake-up call to question not just your sleep, but how you feel during the day. If something is off, ask for help, demand answers, see a sleep specialist. Not just for your health, but for the idea, the project, the relationship, the version of you that's waiting to wake up. Because I want you to live your biggest, most beautiful life -- full of color, curiosity and awe. Wild and wide awake. So I'm asking you, is your tired different? (Applause)