For Years, Doctors Told Me My Exhauastion Was Normal
Lindsay chronicled her 20-year search for answers, coming to terms with her narcolepsy diagnosis in this essay for SELF MAGAZINE. You can find the original article here.
One afternoon five years ago, while I was working as the head of talent relations for the Television Academy, I was sitting in a meeting planning for the Emmys (as one does). I was excited, engaged, on the edge of my seat…until I wasn’t. Suddenly, exhaustion consumed me. The need to sleep hit me like a weighted blanket, making me feel heavy from eyelids to toes.
Trying not to draw attention to myself, I stamped my feet under the table. Still sleepy. I pinched my thigh so hard I nearly drew blood. No dice. I’d resorted to biting my tongue when an eerie sensation swept across my body: If I don’t go to sleep right now, I am going to die.
Terrified, I excused myself. I curled up in a bathroom stall and went to sleep on the toilet with my head against the wall. I woke up five minutes later feeling a little better, splashed water on my face, and returned to the meeting.
I saw my primary care doctor as soon as I could. She tested my thyroid and sent me for a sleep study (an overnight exam commonly used to diagnose sleep apnea). A few weeks later, her office emailed me that everything looked fine and attached a pamphlet called “Sleep Hygiene: Healthy Habits to Improve Your Sleep.” It wasn’t the first time I’d seen it.
I’ve never been far from sleep. As long as I can remember, I’ve fallen asleep in cars I wasn’t driving and was the person who randomly shouted “I’m awake!” while dozing off watching TV. For nearly two decades, I tried to talk to doctors about the roller coaster of exhaustion that was my life. They blamed my fatigue on everything from the fact that I used my laptop in bed to my punishing work schedule as an advance-team staffer for President Obama. Okay, fair. But I was even sleepier than that.
Occasionally a doctor would suggest routine bloodwork to check my hormone levels or recommend that I do another sleep study. But the tests showed nothing. And I would either start feeling better, or I would move to a new city for work and start over with a new primary care doctor. I have so many copies of that stupid pamphlet.
Actually, it’s not a stupid pamphlet! It’s full of healthy sleep practices. But it made me feel like I was to blame. If only I could sleep correctly, I’d feel rested! Yeah, no. I still knew something was wrong.
Something was. By the time I turned 35, I was more than just sleepy. I had terrible brain fog and memory issues, and I lost chunks of time when driving, washing dishes, or typing emails. My body was still doing the tasks, but my brain had gone to sleep. And as tired as I was during the day, I had night terrors and sleep paralysis. Night after night, I was awoken by a child’s voice asking to hold my hand. How would I know that I was experiencing a hypnagogic hallucination that needed medical attention?
Eventually, I just…kind of stopped sleeping. Most days, I felt like a zombie with little control over my emotions. I hoped that a higher dose of anxiety medication would make everything better. It didn’t.
And then the sleep attacks started: That sudden, all-consuming exhaustion I felt at the Emmy-planning meeting became a regular occurrence. It started happening two to three times per week, forcing me to take a nap wherever I could—once in a dark mailroom and sometimes on the concrete floor between rows of seats in the Academy Theater. So when I got yet another message from my doctor that everything was fine, I was apoplectic.
I concede that I didn’t live the “healthiest” lifestyle. I worked too much. I didn’t get enough exercise. Perhaps I ate too much cheese. But I couldn’t for the life of me believe that my habits caused…tiny child ghosts. That night, fueled by Ben & Jerry’s and red wine, I spiraled down a Google rabbit hole. I ugly-cried my way to the ends of the internet as I desperately searched for symptoms of a sleep disorder, mainly zeroing in on sleep apnea, since that was really the only one I’d heard of.
Two days later, I returned to my doctor, prepared to lay out an Annalise Keating–level defense that something else was happening to my body. She stopped me—mid opening remarks—and told me we were beyond our collective knowledge on sleep. Finally, with her concession, I was referred to a sleep specialist.
Three months later, with the appropriate testing, I was diagnosed with narcolepsy—something I had never considered. The only familiarity I’d had with the disorder was from Deuce Bigalow: Male Gigolo, in which the main character’s “date” falls asleep in her bowl of soup. The sleep specialist explained that narcolepsy doesn’t always look like the silly depictions we see on TV or in the movies. It often looks like my symptoms: excessive daytime sleepiness, fragmented sleep, hallucinations.
The diagnosis was a relief—and marked a new journey. With narcolepsy you don’t get better; you get better at having narcolepsy. Four years later, I’m feeling pretty good. With some trial and error, my sleep specialist and I have found the right medication that curbs most of my symptoms—I take a daytime stimulant as well as a nighttime medication that helps me get deep sleep and stay asleep. (A silver lining of my diagnosis: It turns out that my anxiety issues stemmed from untreated narcolepsy and have dissipated since I found the right treatment plan.)
I still get tired, but a daily 20-minute nap helps me feel more refreshed in the afternoon. Stress makes sleep attacks more likely, so I try to meditate every day. I’ve also gotten good at listening to my body: If fatigue starts to creep in, I won’t drive; if I’m struggling in the afternoons, I’ll try to schedule important meetings before lunch. I also noticed that sweets and simple carbohydrates make me sleepier during the day, so I typically save those for the evening. I still have bad days, but I have tools to get through them when they happen.
My story is not unusual. Experts estimate that narcolepsy affects around 200,000 people in the US and takes an average of 10 years to get diagnosed. On top of that, only about 25% of people with narcolepsy receive a diagnosis. I wish I found my way to a sleep doctor earlier in my journey, but I’m also proud of myself for not giving up. Sometimes that inner voice telling me something was seriously wrong was quieter, but I never shut it out completely.
If you, too, are dealing with a sleep issue that disrupts your life, we’re not alone. Around 70 million people in the US experience chronic sleep problems. There are a variety of social factors, like socioeconomic status and neighborhood safety, that can disrupt sleep, of course. And since millions of people don’t have health insurance in this country, not everyone with a sleep disorder is able to receive a diagnosis and quality treatment. But if you have access to a primary care doctor and feel like you’re doing everything you can to improve your sleep and it’s just not working, I highly recommend asking them to refer you to a sleep specialist. Your concerns are valid, and you deserve to feel better. You may get pamphlets, and they may help, but you should also always listen to the voice in your head.