4 Things That Contribute to the Stigma of Having Narcolepsy

Chronic illness can come with a lot of grief. Most of the time it’s based on preconceptions others place on us, and sometimes it’s the fact we often internalize the stigma of our illness.

The other day I joined my mother for a lunch date to meet a friend and her daughter. Within the first five minutes of being seated, my mother decided to bring up how I am narcoleptic and I had dozed off during the car ride over. Of course the typical ensued, mentions of “Rat Race” and “Deuce Bigalow” and “You’re not going to fall asleep at the table, are you?”

Eye roll.

I was diagnosed with narcolepsy this year, so it was the first time I had dealt with this firsthand. I’ve read other people’s accounts and their stories usually fall along the same line — narcolepsy is treated as a joke. But why? In the same situation, if it was some other condition, I don’t think it would be linked with hilarity. If I was epileptic and someone asked if I was going to have a seizure at the table, I’m pretty sure that would cause a collective gasp of shock and be seen as callous.

After racking my brain for a few days, this is what I surmise causes others to be so flippant about narcolepsy:

1. Rarity and invisibleness.

Narcolepsy is a rare disorder. Though it is probably under-diagnosed, the current incidence rate is estimated at 1 in 2,000 people. To put that in perspective, the T-Mobile Arena holds 17,500 people for hockey (Go Knights Go). At capacity, there would be 8.75 narcoleptics in attendance. Those odds are so slim they make the casinos here look charitable.

Narcolepsy is also invisible. You can’t tell something’s going on just by appearance; we don’t look sick. Perhaps if someone catches us in the middle of a cataplectic attack (which not all narcoleptics have) things might seem a little off. But even so, people are more likely to assume we lost our footing than to think a simple emotion was able to make us topple over.

I think this combination of rarity and invisibleness contributes to other people’s dismissiveness about narcolepsy. There are disorders that are rare but obvious and therefore unquestioned. Alternatively, there are conditions that are invisible but not so rare that someone’s only exposure to it is because of a work of fiction.

2. Sleep and its elusiveness.

For something humans spend so much time doing, sleep and its processes are not wholly understood. Sleep is elusive to even the scientists who study it, so it isn’t surprising the common person doesn’t really understand it either. Humans need certain basic things in order to function and they’re often not given much thought. You need food and water. Your heart has to beat. You have to breathe. But you also have to sleep.

Go long enough without food or water — that causes problems. Less than optimal heartbeat or breathing — definitely an issue. But sleep is kind of an outlier. It’s put on the back burner for a good time or a work deadline. And when we do sleep, the question is whether we got enough restorative sleep, since that’s the kind that actually matters. There’s no way for us to tell how much REM or non-REM sleep we got or how long was spent in each cycle.

If we skip a meal, we get hangry and may make up the missed calories later on. If we have chest pain or shortness of breath, we can usually take it as an indicator that something is awry with our heart or lungs. However, in the case of sleep, the brain — and only the brain — is in charge, and the part of us that might be able to raise a flag isn’t conscious.

The only indication we might have is how rested we feel in the morning. But honestly, after a while isn’t it hard to remember the last time you felt rested? From high school and extra-curriculars, to college and finals, then work and deadlines, and not to mention newborns and laundry, many of us are always tired. It’s hard to distinguish life, or screen time, or that maybe you need to invest in a Sleep Number mattress, from an actual health issue. It’s hard for most to fathom how someone with narcolepsy can feel a different kind of tired.

3. Sleep and its stigma.

There is a lot of stigma attached to sleep. The main markers of narcolepsy are excessive daytime sleepiness and sleep attacks. For someone to sleep at night but still feel sleepy or need naps during the day is seen as lazy. To most, the only person who should be sleeping during the day is an infant/young child or someone working a graveyard shift. Anyone else is generally seen as lacking ambition, having a poor work ethic or being depressed.

No matter how hard I work at my job or how well I perform, if someone saw me napping in my car or at my desk, at best it would just hit the office rumor mill. At worst I’d probably be fired if I couldn’t prove the nap was off the clock. Even if I’ve shared my condition with my employer and they’ve agreed to accommodate me, it wouldn’t stop the “must be nicers” from passing their own judgments. Even though sleep is as natural and necessary as eating or taking a walk, it is still deemed inappropriate.

4. The vicious cycle.

My narcolepsy comes with a side of cataplexy, as it does for about 60 percent of those with the condition. Cataplexy is involuntary muscle weakness associated with strong emotions. Specifically for me, I get cataplexy when I laugh. While I love to laugh and joke and I pride myself on having a pretty good sense of humor, I also have to be conscious of my surroundings like making sure there’s something I can lean on or a chair I can quickly sit in if I can’t keep my composure. It’s less noticeable if I’m already seated. I have to be especially wary that someone doesn’t make me laugh while I’m carrying my daughter.

I think it’s easy to see that having and hiding my cataplexy is daunting, especially in social situations. I’ve always been the more reserved type and I think my anxiousness in social situations kind of combats my ability to relax enough to laugh and actually trigger cataplexy. Still, the last thing I want is to drop a cocktail glass or for my legs to start shaking like Bambi in front of people. Because then I’d have to explain and then the cycle would ensue. Narcolepsy, the joke. Needing extra sleep and its stigma. So I keep my guard up because seeming aloof is generally better than feeling ridiculed.

I know not being open about my condition just reinforces its stigma. I don’t know many people but if I was honest with the ones I do, at least narcolepsy would have a real face, not just Mr. Bean or the chick that couldn’t drink soup. If we’re going to curb narcolepsy‘s stigma, and the stigma surrounding chronic illness in general, we have to be willing to be vocal about it. We have to use the opportunities available to us to share our experiences and better inform others. Otherwise things won’t change.