What It's Really Like to Be a Writer with Chronic Fatigue

The heartbreak that comes with the disconnect of your own brain is unfathomable. Our brains, aside from the beating of our own heart, is what keeps us moving forward every day—it gives us reason and purpose to our days. They are meant to work with us toward achievements, keep us alert and help us process what goes on both in our mind and our environment.

But with chronic fatigue, you feel detached from reality—from everything—but most significant is the detachment from your entire being. You’re washed out and empty.

It’s like everything you have learnt throughout the course of your life, you watch slowly fade away in your rear-view mirror. You struggle speaking a language you’ve known your whole life. Your thoughts float away in little clouds, just far enough that it is out of reach, taunting you. You can no longer string together a beautiful constellation of words like you once could. Instead, you find yourself staring blankly into the dark abyss of nothingness. You witness every ounce of personal power slip through your fingertips.

Writing has become one of the biggest challenges for me since struggling with the debilitating symptoms that come with chronic fatigue. A couple of years ago, I could wake up and brew myself some coffee, open up my laptop and spend hours threading my thoughts into a blanket of expressive imagery so easily. I started working on both a sci-fi romance novel and a self-help book, both of which became huge passions of mine.

I was living in this whole other world inside my head. I could visually see the whole story playing out in my mind and I was obsessed with it. I would ride the bus to work and jot down notes as ideas came about. I had cultivated a daily routine that I looked forward to every single day—it made me excited to go to bed so I could wake up early and do it all over again. I had passion flowing through me and it fuelled me to constantly work toward a goal I had wanted since I was a little girl: to become a published author.

As my symptoms progressed, I found it more difficult to get into that natural groove. Ideas stopped coming to me and I really had to dig at my brain to try and paint the obscured image I had in my mind with my words. I could no longer see this made-up world inside my head. I slowly drifted out of my routine as every day felt more unpredictable. Getting out of bed was impossible and seemingly every ounce of passion I had eventually vanished because, it took brain power that I no longer had. Novel writing came to a halt.

Now, I can’t write every single day like I used to. Most days I feel like a fraud calling myself a writer because, what kind of writer doesn’t write? I’m lucky if I can get an article or two done in a month if I’m really pushing myself, but more often than not I spend less time writing now more than I ever have. Though I can feel the passion calling out for me every day, I’ve lost the ability to grasp it long enough to actually do something with it.

I try to fight through it. I feel a small fraction of the struggle comes with the insecurity from being so self-aware of just how much of my cognitive function and sharpness I have lost. As I’m sure many of you other writers can relate to, I am of course a perfectionist when it comes to my writing. I am my own worst critic. But I think it’s less about the perfectionism and more about the idea that even when I do write something like this for example, despite it coming from a place of truth, the fatigue and brain fog still overpower my ability to feel connected with my work which is discouraging and disheartening.

So the question remains: what is one to do when your brain quits without a two-week notice?

I don’t have the answer. Writing requires heavily on two things: dedication and the ability to use your brain to create a mental image with your words. And the fact of the matter is, with chronic fatigue, you lose control of both. Every day is unpredictable. The best you can do is roll with the punches and pray that, at some point, a burst of both inspiration and energy strikes and you act on it quickly enough to create something that you’re proud of.