Community//

Invisible Isolation

Invisible illnesses obviously take a heavy toll on physical health. What about the emotional implications of looking "normal" while feeling everything but? 

Wide awake in bed at 2:37 a.m. on any given weeknight is an incredibly lonely place that I often find myself occupying. The world around me is utterly silent and fast asleep, and in a desperate attempt to rejoin them in their peaceful slumber, I begin to calculate my options.

Breathing exercises to help me get back to sleep? Not working.

Guided sleep hypnosis track? Also, not working (has it ever?).

Carb-heavy snack? Now I’m just feeling bad about eating in the middle of the night. Not working.

Is it too late to take that “only use during emergencies because who knows what it’s doing to my brain long-term” sleeping pill?… Yup. Damn.

Defeated, I lay in the dark and resign myself to counting sheep — praying that I drift into another fitful phase of “sleep” until morning comes. Then, at least I can reunite with the rest of the working world— albeit in a foggy, sleep deprived haze.

Welcome to every single night with narcolepsy.

I was diagnosed with narcolepsy at age 24 after years of dealing with severely disrupted nighttime sleep (we’re talking awakenings every one-to-two hours) and excessive sleepiness during the day. Fielding some common questions in advance here — no, I don’t fall asleep in my food and no, I’ve never seen “Rat Race.”

There are a lot of misconceptions about narcolepsy, and likely it’s nothing like the depiction in “Rat Race” (although, never having watched it, I can’t say for certain). 

Narcolepsy is a neurological disorder that affects the region in the brain that controls sleep and wake cycles. It’s thought to be caused by an autoimmune reaction to a virus or other stressor that results in the destruction of orexin, a neuropeptide that regulates wakefulness and appetite, among other things. Losing this peptide not only affects your ability to stay awake and regulate appetite during the day, but it also prevents your body from reaching the most physically restorative phases of sleep at night, which can lead to host of other health issues.

Narcolepsy looks a little different for every person who has it, but my symptoms primarily show up in the form of intensely disrupted nighttime sleep, disturbing hallucinations upon falling asleep and waking, sleep paralysis, and excessive desire to sleep during the day. I have dealt with these symptoms for years, not knowing what was wrong with me and keeping the worst of them to myself out of fear that I was going crazy.

For a while now, I’ve vaguely told people that I had “really bad sleeping issues” while obsessively trying to maintain a tight reign on my sleep and declining health. I’ve slogged through years of sleep deprivation while trying to maintain the delicate facade of “normalcy” (whatever that is), and not rocking the boat too much for those around me. For years, I’ve beat myself up over not just being able to “deal with it” and keep smiling through total energy depletion.

It. Has. Been. Exhausting.

I’ve had sleeping issues since I was a kid, but college is when things started to *hit the fan*. My freshman year, after a particularly bad bout of recurring sinus infections, I found that I was coming home from classes and passing out for hours at a time. Even though I was “sleeping” at night, I woke up feeling completely drained every day and could barely focus during classes. After about a month of feeling like this, I went to the doctor to be tested for mono.

Those results came back negative, as did a wide variety of tests doctors would order over the next six years trying to figure out what was wrong with me. From blood tests to cultural vitamin assays, I’ve been a human pin cushion more times than I can count. I’ve seen countless specialists, who chalked my symptoms up to everything from thyroid imbalances, to food allergies and anxiety. They prescribed various pills and lifestyle adjustments, all of which helped very little.

Meanwhile, my energy and hormone levels continued to tank as I pushed myself harder to keep up with the delicate balance of university classes, career development, and a social life that young adults are expected to iron out in their early 20s.

Despite complete and utter exhaustion, I tried my hardest to muscle through years of poor sleep. I became an avid runner in an attempt to wake myself up in the mornings before classes. I adopted restrictive eating patterns — hoping to sort out my constant fatigue by keeping a hardcore raw vegan diet. I followed a strict sleep hygiene regimen (even on weekends) to try and keep some semblance of a circadian rhythm.

Needless to say, none of these things actually helped my situation much, and further isolated me from other “normal” 20-year-olds. I could frequently be found passed out in the sauna at my school’s rec center, exhausted from an undiagnosed sleep disorder and freezing from a nutrient-deficient diet.

These years were some of the most isolating I have experienced in my life. Up until that point, I had always been able to count on seeing my best friends at school each day, and coming home to a supportive family each evening. But college was totally different. I know many people look back at their university experience with fond memories of frat parties and Spring Break trips. Mine are mostly a haze of fatigue, loneliness, and health anxiety.

I made it through, though. Toward the end of my senior year, I was able to muster enough energy to join my university’s wakeboarding club — a sport that I’ve found to be particularly helpful in pumping the adrenaline my body so desperately craves to stay awake.

Through this, I started to build friendships with people that I could hang out with during the day, instead of compromising my already faulty sleep cycle by staying out late at night. I completed my studies on time, graduated with honors, and got a full-time job shortly after for a wonderful company with the most incredible teammates. I got my first “grown-up” apartment. I found an amazing support network of friends. I experienced real love and real heartbreak for the first time.

These may seem like standard life events for someone my age, but to me they are some of my proudest accomplishments. They serve as reminders that I am strong, even when my body feels weak. They show me that there is an “other side” to even the most isolating of times. Most of all, they remind me that I am worthy of living a full, wonderful, and “normal” life, even if I’m not quite as capable in some departments as I’d like to be. Sometimes the least exciting achievements are the most important.

In November of this past year, I finally saw a neurologist who was able to diagnose me through an overnight sleep study and MSLT (Multiple Sleep Latency Test). My EEG results showed a pretty textbook case of narcolepsy, and just like that — after years of dealing with this unnamable illness — I finally had a diagnosis and path to treatment.

I wish I could say it’s been smooth sailing since then, but this year has had its own share of ups and downs as I trial different treatment paths. Unfortunately, deep sleep isn't something that's easily remedied with common sleeping pills. But I’m exploring treatments that have me closer to sleeping through the night on most days, and farther away from those lonely 2:37 a.m. mornings.

For a long time, I’ve struggled with a silent resentment at what this disorder has stolen from me. I’ve punished myself for the coping mechanisms I used when I was undiagnosed. I’ve felt massive amounts of shame and guilt over not being able to work through this naturally, on my own.  As someone who has always been highly competitive, I hate this disease that saps my energy away.

But recently I’m starting to realize that physical energy isn’t the only key factor in our drive as human beings. Our hopes, enthusiasm, our spirit — that’s what truly sustains us. Narcolepsy may have control of my central nervous system, but it won’t ever steal my ambition or my dreams.

And that is what I’d call a huge wake-up call.

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