When Your Illness Gives You a Complicated Relationship With Sleep

I sleep a lot. Around nine hours a night. Except when I’m really tired; then it’s more like 11 hours. And I exist in a world where people say things like “Well, I got more than four hours last night so I’m feeling pretty good.” You can’t see my face right now, but imagine Jim Halpert, the character from “The Office,” staring directly into the camera as if he’s asking for confirmation that whatever just happened is crazy. That’s how I feel.

I’ve always slept a lot. As a kid, I got a solid 10 hours if I went to bed at bedtime, which I usually did because I was a sweet little angel, obviously. But my relationship to sleep got complicated when I got sick. That’s a familiar story to anyone with a chronic illness, I’m sure. Suddenly, sleep didn’t make me feel better. I didn’t reboot overnight and wake up free from annoying glitches. I woke up after 12 hours feeling like a college kid who went out four nights in a row and hadn’t gotten five straight hours all week. I tried sleeping less for a while to test out the hypothesis that too much sleep was messing me up, but discovered that if I cut it short my muscles would ache all day like I’d started Cross Fit overnight.

So I slept, but I felt frustrated by it. I still feel frustrated by it. Why do I have to sleep so much? And why doesn’t it ever work? It’s frustrating to spend so much time on something that is necessary, but woefully ineffective.

When I hear things like “I stayed up ’til 4 a.m. working on that paper because I got too drunk the night before and blah blah blah blah,” I want to grab these undergrads by the shoulders and shake them like Adam Sandler did to that grade schooler in “Billy Madison.” “You don’t have to feel miserable all the time! Don’t choose it!” That’s what I would yell at them. Because their bodies could actually feel good. And they wouldn’t even have to miss out on all that much to reach an effective balance that lets them sleep and study and go out. They could feel great. It’s possible for them. It’s not for me.

I’m trying so hard and sleeping so much and struggling to get myself out of bed this week. Not because I went out drinking, or stayed up late to write a paper. Just because my body can’t figure out what the hell it’s doing. Don’t get me wrong; it’s doing its best and I’m grateful for this body and its abilities and the fact that it tries So. Dang. Hard. But on weeks like this, when I sleep and sleep and sleep and everyday activities turn into Herculean tasks meant to test my fortitude, I get a little crabby. Maybe a smidge bitter. I get impatient with a culture that encourages healthy people to run themselves ragged and to complain that they’re tired. They don’t have to be tired.

There are health fairs on campus every semester that try to encourage students to listen to their bodies and take care of themselves. They have meditation sessions and massages, and they give out resources and information on sleep hygiene. I already know all that stuff. I know the tips and tricks and methods. I would be the most well-rested, self-caring healthy person, I’m telling you. I would take full advantage of being able to feel good. At least, that’s what I tell myself.

I guess I don’t really want healthy students to figure out they could feel amazing, like, all the time. Being tired is something we have in common. I should hold onto that. Solidarity is nice, even when they still don’t understand what it feels like to be can’t-get-out-of-bed tired for no discernible reason for so long you start to wonder if it’ll ever end. And even though I know that they’re saying “I’m so tired. Like, guys, so tired” right now, they’ll be out with their friends tonight or up until 4 a.m. watching “The Office” and I’ll be in bed, because I’m so tired, like, it’s unreal, guys. I’m so tired.

If you’re a healthy college student reading this, please know that I don’t really want to scream in your face (well, kinda). You do a lot and you’re doing your best. Forgive me. I’m just jealous of your body. For readers with chronic illnesses, do you feel the same? What goes through your head when you hear “I’m tired?” Tweet me @brightandweird.

Find this story helpful? Share it with someone you care about.

Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

uber logo

When I Tell My Uber Drivers About My Chronic Illness

This is a story about Uber drivers. I will not be going into the politics of the sharing economy. I leave that to policy makers and entrepreneurs. I will instead talk about the heart and compassion I have witnessed in my Uber drivers, and what this has meant to me as someone with a chronic illness. By nature my [...]
stuffed bear wearing parka and scarf sitting on a chair outside in snow

Why I Don't Dream of a White Christmas as Someone With Chronic Fatigue

It is apparent in my voice as I look up at the sky after the fairly hefty snowfall we had a couple of days ago. I’m not quite sure if I’m talking to the Snow God. I’m quite sure that some cultures believe in a Rain God. But a Snow God? Honestly, I would have [...]
woman sleeping on red couch

8 Things I Wish People Understood About Chronic Fatigue Syndrome

October marks my second year of dealing with the effects of chronic fatigue syndrome (CFS). I have learned a lot on my two-year journey and my life has changed in ways I never could have imagined. Below are some things I wish more people understood about those with CFS: 1. The illness is real.  I will admit that [...]
Mid adult woman sleeping on a couch

Why I'd Like to Change the Name of ME/CFS to 'Gray Area'

“What is your disability?” I have had myalgic encephalomyelitis since I was in high school — almost 20 years now. Of all the questions people ask about the nature of my illness, this is the question I hate answering the most. You would think the name would be the most straightforward of all; but when [...]