How My Narcolepsy Diagnosis Made Me Fight for Disability Awareness
Key takeaways:
Lindsey Kizer struggled with sleepiness for decades before she found out why.
At 29, she was diagnosed with narcolepsy.
Now she’s a disability advocate for others living with the condition.
Lindsey Kizer’s notebooks from her high school writing class are filled with entries about sleep. The depth of her sleepiness. Her struggle to stay awake in school. Her anticipation of the afternoon dismissal bell that would allow her to go home and nap.
When she reads through those notebooks now, it’s obvious to her that something wasn’t right. But it took another decade before Lindsey received a narcolepsy diagnosis.
Narcolepsy is a disorder that causes extreme sleepiness during the day. Other symptoms can include sleep paralysis and hallucinations. Some people also experience sudden muscle weakness triggered by a strong emotion. In Lindsey’s case, she gets this symptom when she laughs.
Overcoming the stigma of narcolepsy
There are widespread misconceptions about narcolepsy. There is no cure for the condition, but certain medications can help control the symptoms. Untreated, narcolepsy can be debilitating to daily life.
For Lindsey, the path to treatment wasn’t straightforward.
“The stigma, the trouble getting diagnosed, the trouble getting treatment, the trouble with employers — those are all very common themes,” she says.
Lindsey, who is 33 and lives in Belmont, North Carolina, is now an advocate for others in a similar position. She’s a volunteer speaker with Project Sleep, a nonprofit that raises awareness about sleep health. At her day job, she’s part of an employee-resource group that supports people living with chronic illnesses and disabilities. She says she wants to raise awareness about the needs people with chronic conditions have in the workplace.
“I do feel like it’s helping to change some of those stigmas,” she says.
Sleep problems from the start
Intense sleepiness was a part of Lindsey’s life from childhood until her diagnosis, at age 29.
“As a kid, when my brothers were waking up early to watch Saturday morning cartoons, I would sleep until I was woken up,” she says. “If I was in the car, I would go to sleep. If we were sitting down watching TV, I would doze off.”
She fought to keep her eyes open in class, and would try to catch up by getting notes from classmates.
“The amount of pictures of me sleeping is shocking,” she says.
Troubling hallucinations worried her
Around age 11, Lindsey began experiencing what she now knows were narcolepsy-related hallucinations. She would hear and see things that weren’t happening while in bed at night.
“The first one that I ever remember, I woke up in the middle of the night, and I saw a man all in black coming through my window,” she says. “I can’t move, I can’t scream. I just can see him walk around the room, taking my Beanie Babies.”
Lindsey and her family brought up their concerns to her pediatrician, but not much came of it. “There was never a point where I felt like they took it seriously,” she says.
The thief in the night was a recurring hallucination that Lindsey experienced well into her college years. Without a sleep disorder diagnosis, she tried to find ways to explain the experiences. Maybe it was because of watching scary movies or eating something bad before bed, she thought.
“I found ways to rationalize it,” she says.
Misdiagnosed with depression
In high school, Lindsey says, her daytime sleepiness and struggles to be involved in daily life were misdiagnosed as depression.
“Throughout high school, college and a lot of my early after-college years, it was this big cycle of one antidepressant after another,” she says. “I would feel different, but I wouldn’t feel less sleepy.”
Getting through the workday was a challenge. She had to nap in her car at lunchtime instead of eating, and then again before commuting home.
At the age of 25, she saw yet another doctor, hoping for answers. She described the eight different antidepressants she had tried and told him that none of them led to any improvement. She also told him about the impact sleepiness was having on her daily life.
“His reaction was, ‘You’re just going to have to live with it. You’re not 16 anymore,’” she says.
Lindsey tried self-medicating: Benadryl at bedtime and a steady stream of coffee and energy drinks throughout the day.
A tipping point and a narcolepsy diagnosis
The tipping point came when Lindsey was in her late twenties. She was driving back from a work conference and could barely fight the intense sleepiness while behind the wheel.
She was driving along the two-lane highway in the middle of South Carolina, desperately searching for somewhere to pull over for a coffee. She suddenly swerved to avoid hitting two deer that jumped in front of her — she thinks. To this day, she still doesn’t know whether the deer were real or a hallucination caused by her condition.
A police officer pulled her over for driving too slowly.
“I was driving probably about 10 or 15 [mph] under the speed limit, because I was so terrified,” she says. “I’m thankful there weren’t other cars on the road, because who knows what could have happened? But that was my wake-up call.”
Around that time, Lindsey got married. That gave her access to her husband’s health insurance policy and new options.
With renewed desperation for answers, she sought out new doctors. Eventually, she was referred to a sleep specialist and underwent sleep tests.
At age 29, Lindsey was diagnosed with narcolepsy. That’s when she says the puzzling pieces of her life began to fall into place.
“With the depression [misdiagnosis], the symptoms did line up. I’m not going to deny that. There is a lot of overlap. But, to me, it never made sense,” she says. “Throughout your life, everyone has ups and downs. But the sleepiness was always constant.”
Being inclusive means recognizing disabilities
Now Lindsey takes a combination of medications to manage her symptoms.
“I’m not gonna say I’m exactly where I want to be, but I’m a lot closer to that. I feel like I’m getting back in my groove,” she says.
Finding a workplace that accommodates chronic illness and disability has been critical.
“My managers know the situation. And during periods where I may be struggling, we brainstorm different things to help me to get through,” she says. “My first manager actually was one of the only people I think I’ve ever met that actually knew what narcolepsy was.”
She says she hopes more companies will work to be inclusive of everyone — including those with disabilities.
“Anytime we talk about diversity and inclusion, I do feel like a lot of times, that’s one thing that’s left out,” she says. “You can find something that is going to be accommodating for the employee but not hinder the employer. When we have accommodations, it allows us to reach our potential.”
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