I’m always fighting to stay awake.
I try to get a full night’s sleep. I used to preach “8-12 hours” to people but honestly, it makes no difference if those hours come from half a night of sleep or an obscenely long nap. Caffeine has no effect on me anymore.
I feel guilty about it. When I sleep during the day, I know there are better things I could be doing and quality time I miss out on. When I’m awake during the day, I’m practically useless. Just a bunch of yawns and a foggy brain in the shape of a human.
I know how I could fix this. I know when I experience chronic fatigue, it’s a sign my salt intake isn’t where it needs to be. I know I need more water, more electrolytes, less coffee and Celsius. But sometimes the fatigue is mental too. I’m tired of having to work twice as hard to be half as functional as everyone else.
I live with a condition called POTS, or Postural Orthostatic Tachycardia Syndrome. My autonomic nervous system, which controls things like heart rate, blood pressure, blood sugar, and body temperature, can’t regulate itself properly. Sometimes I randomly pass out. Other times, the brain fog and lethargy are interrupting my day-to-day life.
POTS patients tend to have poor quality of sleep, including difficulty falling asleep and restlessness. While this isn’t fun for anyone, fatigue and sleep deprivation can increase the chance of an episode—which can range from feeling tired and clouded, or fully losing consciousness at any given moment.
POTS overwhelmingly affects younger women, with 85 percent of all patients in the U.S. being female. Despite this, it’s misdiagnosed 85 percent of the time too. POTS patients are often told their symptoms are a product of anxiety, when it’s actually a separate diagnosis that they cannot control.
Living with this condition isn’t a death sentence, but it’s reported that 25 percent of POTS patients are so perpetually sick that they can’t attend work or school. I found that my experience fluctuates. Some days it doesn’t affect me whatsoever, other days, it rules my life.
No one prepares you for the unique experience that is living with a chronic illness in college. To most, I just look like the normal amount of tired for someone my age who’s a full-time student—I don’t look sick. But internally, I’m battling the guilt of feeling like a burden and the pressure of living with exhaustion. I’ve always felt frustrated with my body for not working like everyone else’s and with bystanders for not understanding why I am the way I am.
At home, I felt comfortable relying on my parents to support me during episodes. Here, I struggle to rely on the people around me. I feel like I’m asking for too much because my friends didn’t sign up to the obligation of taking care of me … I worry they might not know what to do if I pass out. I feel awkward sometimes having to brief my friends and say, “Hey, I might randomly fall or lose consciousness and you have to put my feet above my head, grab the Liquid IV from my bag, and feed me salt. Sorry!” Honestly, it’s less anxiety-inducing to just prepare for having to deal with it myself.
God forbid I get frat flu, strep, or COVID. Getting a common cold or other regular sickness affects people with chronic illnesses differently. Obviously, not all who experience chronic illness are the same. Not even all experiences with POTS are the same. But more often than not, getting sick with a chronic illness—specifically, POTS—can sometimes be detrimental to our health.
It’s impossible to have a chronic illness and not be socially anxious about it. For others, getting a cold is like a speed bump, but for me, it’s a 30-car pileup. When I get a cold, however, it’s hard to do basic things like get up to go to the bathroom, let alone go to class. Throwing on a mask and taking cough syrup isn’t the easy solution for me that it might be for others.
Because this disability isn’t always obvious on first impression, it can be hard to self-advocate without fear of not being believed, or my problems being minimized. I worry about voicing this problem to my friends and teachers in fear they will assume I’m using fatigue as a cop-out, and therefore find me unreliable.
For example, working in a restaurant for four years entails a lot of standing for 4-9 hours. But if I happen to overheat because I’m too close to the smoker, or stand up too fast when I’m bending down to grab a book, I could risk rendering myself physically useless for the rest of my shift. However, because I’m there to work and not to be taken care of, I usually try to just push through so my managers don’t think I’m trying to get out of work, or think I’m a liability. Worst case scenario, I may or may not have laid down in the establishment’s bathroom to elevate my feet for a bit before returning to work and pretending I’m fine.
When I try to be proactive and periodically snack throughout my shift, I risk catching shit because, again, it seems like I’m opting out of work to eat. I know everyone else is hungry and tired too, but this is essential to taking care of myself and preventing a scene. That doesn’t mean it doesn’t get exhausting to advocate for myself, though.
My hope is that in the future, employers will have more understanding for employees who need accommodations—or at least less resentment. But because this chronic illness is not easily identifiable upon first looking, I worry the future will include more gaslighting, more frustration, and more exhaustion.
Some doctors still lack understanding of POTS. Most primary care physicians will prescribe me Sudafed for a stuffy nose, and it wasn’t until this summer that a doctor told me it could be dangerous to take something that will increase my already too-high heart rate. My foot doctor told my mom she thought I was diabetic due to my cold feet (which led to a whole era of blood tests and more anxiety) when in reality my POTS causes poor circulation and an inability to adequately regulate my body temperature.
I even had a friend at Emerson who has POTS that told me when they were hospitalized due to a bad flare up and COVID, they heard their doctor ask someone what POTS is.
So yes, I’m tired. I’m always napping. And I’m tired of fighting.
Fighting for basic understanding of my illness, fighting for grace when I don’t have the energy to be a functioning adult, and fighting for an invisible disability to be made visible.
