The Mighty Logo

The Struggles of Insomnia When You Are Chronically Ill

The most helpful emails in health
Browse our free newsletters

Between the dull aching pain of my joints, the searing torture of my intestines or the ridiculous amounts of legal drugs constantly flowing through my body, I never sleep. You’d think I’d be grateful I have more time in a day to accomplish things, right? More time to work on Spoonie Essentials Box, to grow my monthly chronic illness care package. But really, I’m constantly walking around functioning like the walking dead. Zombie life is so real. Insomnia is one of those side effects of chronic illness no one ever tells you about. No one says, “You’ll be physically and mentally exhausted, but your body will not sleep.”

The worst part isn’t that I’m in pain and I can’t sleep; the worst part is that I’m awake alone with my thoughts all the time. A never-ending stream of consciousness. Our minds can be our greatest assets or our worst nightmares. I try to occupy the hours with writing blogs, reading for my graduate school classes or binge-watching Netflix but nothing escapes the innocuous thoughts that constantly race through my mind. It never stops. I never shut up. Ask my boyfriend, any friend or family member – if you’re awake I’ll usually try and keep you on the phone for as many hours as you’ll tolerate me. I know I get annoying at times, my extroverted nature always impelling me to process through my emotions and thoughts out loud. My poor support system constantly subject to listening as I rehash, overanalyze and speculate on anything and everything. Nothing is beyond my curiosity in the wee hours of the morning.

I just literally can’t sleep even when I desperately want to. To sit too long with myself, my mind will wander simultaneously to philosophical inquires as well as securing my grasp on reality. Deciphering between the very real nature of my sickness and the possibility that it is all in my mind. For sometimes no one can see my pain. My agony is faceless, the torture is invisible to the naked eye. I literally question whether or not it’s even there in the first place. The lack of energy I seem to always have. The ache of pain no one can see. It’s enough to unhinge anyone. I’ve WebMD’d and Googled the symptoms of all of my diseases so many times, I can almost recite the pages themselves.

I once stayed up for 41 hours. I went to class. I participated in campus activities. I even think I had lunch with a friend that day. I don’t think it’s the longest I’ve been up, but it’s the longest I can remember being awake most recently. The crazy thing is, I thought it was normal. For the last year I’ve slept at most five hours through the night. I usually sleep somewhere between two and three hours. It wasn’t until I was coughing up blood one day when I went to the ER and the mortified look on the attending doctor’s face told me sleeping less than five hours a day for over a year is nowhere near normal. She refused to let me leave the hospital until I’d slept. She said her conscience wouldn’t allow her to let me leave, to operate a motor vehicle knowing I’d been awake for 41 hours.

When I was hospitalized for three months in 2015, I was given sleeping aides but I figured it was because of the volatile nature of the hospital. Nurses, CNAs, doctors, nutritionists constantly in and out of my room. But nope, they give them to you because without them, you’ll never sleep. No one told me that though. Right now I take extended-release medications so that I will “stay asleep.” I hate knowing I can’t sleep without a drug. Yet another thing I can’t do on my own. Another thing that makes me that much more abnormal.

When do I catch a break? I need drugs to regulate my body’s immune system. I need drugs to keep my liver functioning properly. I need drugs to temper the pain. I need drugs to increase my appetite. I need drugs to sleep now, too? Well damn. I guess I have no choice, right? Apparently sleep deprivation can actually lead to death, not to mention apparently when you sleep your body heals. So my body, the body that needs all the help it can get to heal itself, won’t because of all the other medications I take to promote healing – the legal drugs I take to stop the full-fledged assault my body irrevocably launches on itself. The irony in that alone is enough to lose sleep over. (Ha ha, see the pun there? I know, I’m corny, but I laughed.)

I hate it, but I accept it. I set iPhone alarms to take my medication at 10 p.m. every night. I take a bath with lavender oils to relax me. I drink chamomile tea to calm me. I listen to ocean waves to lull my mind into submission. And eventually I fall asleep. I sleep tranquilly.  Dreaming of a time before my illness. I sleep as sound as the girl I used to be, when I took for granted the peace of mind that comes with a good night’s rest.

This post originally appeared on All Things Spoonie Essentials Box.

We want to hear your story. Become a Mighty contributor here.

Photo via nadia_bormotova on Getty Images

Originally published: November 28, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home