#EqualAccess Guest Series Post: On Forgetting You’re Sick

by Serena Maxwell (originally posted on my blog on May 7, 2019)

This post is part of The Exponent’s #EqualAccess Series. Disabled voices rarely get a chance to speak for themselves, but this blog series seeks to eliminate the stigma that disabled people are less than, and need a representative to speak on their behalf. This blog series is intended to break stereotypes by gathering the voices of disabled individuals. #DisabilityExperience

In the image below, the author has long brown hair and smiles over her shoulder at the camera.

Sometimes I forget I have Narcolepsy and Cataplexy. Sometimes I don’t park in the handicapped spot because I feel great, and I don’t want to take it away from someone who needs it more. Sometimes I wake up at a reasonable time in the morning and have plenty of energy to make the phone calls I need to make, to talk to my friends and family, to apply for jobs, to watch a tv show, to read a book. Sometimes I even go to bed before midnight.

But then, all of a sudden, days like this come and I’m reminded that I do, indeed, have a chronic neurological sleep disorder, with all of its ensuing side effects. I’m reminded that the only reason I’m able to forget I have Narcolepsy and Cataplexy is because I haven’t been living “normally” or trying to fit myself into a schedule that isn’t catered towards someone with excessive daytime sleepiness, or because I haven’t gone on any hiking dates recently, or let myself play dodgeball. I’m currently in between jobs, which means I get to sleep as much or as little as my body demands and cater my social schedule to my sleeping schedule.

These days inevitably come, when, despite getting a good seven or eight hours of sleep, there’s this pressure behind my eyes, this fogginess in my head that overwhelms me after taking a shower, and I lay down and take a two hour nap, just three hours after waking up for the day. When I wake from the nap the fogginess has cleared slightly, the pressure has abated, but now my limbs are trembling, my hands shaking and causing typos as I write this blog post, and I still haven’t dared standing up from the couch to get a glass of water because I don’t know how bad it is. My guess is I probably won’t be able to walk, but I need to get better in the next three hours before my church meeting at 7 P.M.

Days like this are a blunt reminder of the reality of Narcolepsy and Cataplexy. Did I take my medication? Yup. Did I get “enough” sleep last night? Yes. Did I even take a nap in the afternoon. Yes, sirree. But sometimes it’s not enough. The symptoms come and go in waves, fooling you into thinking you have a serene beach day, only to be overwhelmed by a tidal wave of fatigue and weakness.

So this is my reminder to those of you who may know someone with a chronic invisible illness: Some days are better than others, and you might forget that your friend or loved one is sick for a while, and they might even forget it for a while, but rest assured that the sickness is not gone. Encourage your loved one and friend to enjoy the good days to the best of their abilities, but do not force them into running faster than they have strength. They know their limits better than you do. Reach out and care about them even on their bad days, so they know you care, even when they can’t play sports with you or even go grocery shopping.

And to those of you with similar conditions as I, take it easy. Let yourself rest as much as you need, and don’t feel bad about taking time off from “normal life” to recover. The bad days suck, but you’re not alone.

Bio: I’m a recent graduate from BYU-Idaho, currently living in Utah County and preparing for law school. I love learning languages, watching Netflix, and all kinds of social dancing (when my legs work). For more information on Narcolepsy and Cataplexy, go to www.narcolepsy101.org.