This is one of many True Story interviews in which we talk to people who have experienced interesting, challenging, amazing things. This is the story of my friend Katie and her Narcolepsy diagnosis.
Tell us a bit about yourself!
My name is Katie G. Nelson and I’m a 28-year-old journalist, photographer and adventurer from Minneapolis, Minnesota. Before finding my purpose in storytelling, I worked as a humanitarian aid coordinator in Kenya while also dabbling in human rights activism in the United States. I also have a master’s degree in public health, which I promptly abandoned for a career in journalism. Currently, I’m a political reporter in the Land of 10,000 Lakes but am attempting to break into the international reporting field focusing on aid transparency issues in East Africa.
I also have narcolepsy. More on that below.
For those of us who don't know, what is Narcolepsy?
Narcolepsy is a chronic neurological disorder that causes the inability to regulate one’s sleep/wake cycle. About 200,000 Americans have narcolepsy making it as common as Parkinson's disease or Multiple Sclerosis.
There are two main components of narcolepsy:
* Extreme and unrelenting exhaustion that can’t be solved by more sleep; we’re constantly tired yet unable to get true, fulfilling rest.
* Cataplexy: Sudden muscle weakness following a strong emotion such as sadness, surprise or fear. Cataplexy can range from a slight face droop to a complete collapse on the floor, all while being completely conscious. About 70 percent of people with Narcolepsy also have Cataplexy. I do not.
There are also several less prominent symptoms of narcolepsy such as:
* Sleep paralysis: an inability to talk or move before falling asleep or waking up, which creates a sensation of being trapped in your own body.
* Hypnagogic hallucinations: vivid and oftentimes violent hallucinations before falling asleep or waking up.
* Automatic behavior: performing normal behaviors (talking, eating, driving) but having no memory of such activities afterward.
There is likely a genetic component to narcolepsy that, when coupled with an environmental trigger like an acute childhood illness, causes the neurological disorder.
I should note that many people with narcolepsy, including myself, don’t suddenly fall asleep without warning. Rather, we’re always exhausted and never feel completely refreshed no matter how much sleep we get or how much medication we take.
When did you realize that you weren't just ... really tired?
I was initially skeptical about having Narcolepsy – thinking more it was congruent with a movie plotline than my 25-year-old self. But three years later, I can clearly see the trail of breadcrumbs pointing toward a sleep disorder, though it took many years of missteps before I got to the end.
As a child, I was always the first to fall asleep at my girlfriend’s slumber parties, always becoming the designated guinea pig to a plethora of late-night hand-in-water tricks. In middle school, I was the last to finish in the annual one-mile running exam because I was just too tired to keep up with the pack (I attempted to salvage my reputation by pretending I was just too cool to run. Shortly before high school graduation, my sleepiness became so acute that I often escaped to a private restroom in-between classes to collapse in a stall and sleep for a few moments.
But despite these hints and my marathon sleep sessions later in life, which at one point lasted 22 hours out of each day, it took over ten years to be diagnosed and treated for Narcolepsy.
How does your diagnosis affect your life on a day-to-day basis?
Medication management and a strict sleep regime determine my day-to-day success.
Generally, my day goes something like this:
6am: I take a combination of three different stimulants then wait until I’m awake enough to get out of bed (usually an hour later).
7am: I head to the kitchen and drink a small glass of orange juice, which helps my body absorb the medication faster. I brew my coffee (quickly) and head to the couch to sleep for another 30 minutes.
7:30am – 11am: This is my awake period when I’m most creative and able to process complex subjects. I try to do my heavy lifting during this time slot.
11am: I take another stimulant that will last me the rest of the day.
4pm: Find a place to take a short nap and clear my busy mind for 30 minutes.
9pm: I take sedative to sleep (many people with Narcolepsy don’t sleep well at night) as well as other medications to deal with the side effects of my stimulant medications.
On the weekends, I sleep. Period. If I’m feeling well enough, I’ll go out one of the night but always end-up feeling like a pile of old bones the next morning.
What would your life look like if you WEREN'T on medication?
What people don’t understand about Narcolepsy -- and sleep disorders in general -- is how sleep deprivation can impact someone’s mental health and emotional stability.
Over the course of ten years, I was diagnosed with dozens of different medical conditions including depression and anxiety, which medications couldn’t seem to lift. I was profoundly and desperately depressed for many years and truly believed that my sadness, lethargy and detachment from the world were caused by some intangible and ever-present haze of despair.
By the time I saw a neurologist, it was clear that I had a severe sleep disorder and he promise me that medication would help. He was right. Within one hour of starting my Narcolepsy treatment, I was an absolutely different person. I was awake, engaged and interested in the people around me – able of seeing a future outside of my bedroom and other than sleep. I literally got my life back.
Obviously, it hasn’t been exactly a cakewalk since then. Some days my medications work well, some days they don’t at all. Sometimes I operate at 85 percent of my potential, sometimes at 40 percent. And on my really bad days, I sometimes grieve; ruminating over the moments I missed in the past and the ones I’ll miss in the future. Sometimes, I feel like everyone is living their lives around me and I’m still in bed, unable to move because my body aches with exhaustion. I can’t lie, those days are excruciating.
I imagine one of the more challenging things about having a chronic disease is figuring out how/when to tell the people in your life about it. When you meet new friends, are on a date, or are starting a job - do you tell people? How long do you usually wait before you tell someone?
When I was first diagnosed three years ago, people would always tell me, “Narcolepsy doesn’t define you” like I shouldn’t put so much weight into this condition, like it shouldn’t be such a significant part of my life.
But I refuse to deny that Narcolepsy hasn’t shaped me. It has. That’s why I believe my diagnosis merits a conversation with the people around me, despite the social faux pas of discussing such things with friends, dates or peers.
I’ve also chosen a career has flexible hours so I can work when I’m most sharp and awake the need to tell my employers is mostly a non-issue these days.
How have the people in your life reacted to your diagnosis?
Most people are inquisitive about my diagnoses, though some think I’m making an off-color joke about being really tired. I usually just deadpan those moments until people realize that I’m serious.
What something you've learned from this that any of us could apply to our daily lives?
I applaud people who say that their chronic illness has made them a better person or that they’re grateful for the experience but I am not one of those people. Narcolepsy has been the single most challenging and heartbreaking part of my life, and I wouldn’t wish this condition on anyone.
That said, I am profoundly grateful for finding a concrete diagnosis and for the ability to access and afford my medication. That is a privilege I will always be thankful for.
And as a final token of appreciation, I want to thank all of the caregivers, the well-wishers and the people who have backed me and patients like me over the years. Despite all of our cancelled plans, vague excuses to stay home and painfully sleepy encounters, you have stood alongside us. Thank you.
More information about narcolepsy:
Narcolepsy Network // Center for Narcolepsy, Stanford Medicine // Julie Flygare: Wide Awake and Dreaming
Thanks so much for sharing your story, Katie. Do you guys have any questions for her? Have any of you struggled with something similar?
P.S. For an interview about the other side of the coin: True Story: My insomnia affects every aspect of my life.