In short · Summary by AI
Lindsay Scola describes living for years with undiagnosed narcolepsy, dismissed as lazy or merely overworked, until a sleep specialist diagnosed her after 19 years of symptoms. She argues that sleep disorders affect around one in five people, that doctors receive very little sleep education, and that people should question whether their tiredness is different and seek specialist help.
- As a teenager at summer school at Yale, Scola began suddenly falling asleep in class, and her family doctor dismissed it as normal busyness.
- Working on the Obama 2008 campaign advance team, she assumed her exhaustion reflected a lack of willpower, since her colleagues never appeared to nap.
- Her frightening sleep paralysis episodes and night hallucinations were attributed to job stress, and a home sleep test for sleep apnea came back negative.
- She was finally diagnosed with narcolepsy at 35, after 19 years of symptoms, and the average diagnosis period for narcolepsy is eight to 15 years.
- Medical students receive on average less than three hours of sleep education across their entire training, which Scola links to missed diagnoses.
- She explains that narcolepsy's five symptoms seem unrelated on their own, and that roughly 20 percent of people have some sleep disorder.
- Undiagnosed sleep disorders are linked to inflammation, insulin resistance, heart attack, stroke and Alzheimer's, so good sleep hygiene alone is not a cure.
- After treatment, Scola says her creativity and productivity returned, and she urges viewers to ask whether their tiredness is different and seek a sleep specialist.
- 0:03Overachiever Kid Falling Asleep
- 0:51Exhaustion as a Badge
- 1:37Obama Campaign Advance Years
- 2:22Doctors Dismiss Her Symptoms
- 3:08Finally Referred to Specialist
- 3:45Narcolepsy Diagnosis and Delay
- 4:33Five Symptoms of Narcolepsy
- 5:16Sleep Disorders Affect Millions
- 5:55Why Sleep Matters and Risks
- 7:23Life After Treatment
- 8:15Call to Question Your Tiredness
Overachiever Kid Falling Asleep
0:03I 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.
0:25I'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.
0:48And 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.
Exhaustion as a Badge
1:12I 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.
1:34In 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.
Obama Campaign Advance Years
1:55I 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.
Doctors Dismiss Her Symptoms
2:22As 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.
2:42One 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.
Finally Referred to Specialist
3:07I 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.
3:26And 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.
3:43And 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.
Narcolepsy Diagnosis and Delay
4:21No 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.
Five Symptoms of Narcolepsy
4:47Which 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.
5:07But 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.
Sleep Disorders Affect Millions
5:32We'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.
Why Sleep Matters and Risks
5:55Now, 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.
6:17Sleep 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.
6:44Aside 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.
7:05This 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.
Life After Treatment
7:31I 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.
7:58Now 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.
Call to Question Your Tiredness
8:31Because 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)
More TED Talks transcripts
- Why It’s So Hard to Listen When You Disagree | Emily Kasriel | TED
- Why We Should Design Cities Like Disney | Zach DeBoer | TED
- How to Stop Homelessness Before It Starts | Jen Loving | TED
- Inside the “Play Labs” Helping Refugee Kids Heal | Erum Mariam | TED
- What Makes a Good Game? | Eric Zimmerman | TED
- The Secret to Lasting Love | Eli J. Finkel | TED
The transcript comes from the captions YouTube has for this video, and the summary is written by AI, so both can contain mistakes. Creators can ask us to remove a transcript on the contact page.
← Transcribe another video