16 Creative Descriptions of What Chronic Fatigue Syndrome Actually Feels Like

May 12 is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is a long-term illness that causes extreme fatigue, brain fog, dizziness, chronic pain, and other symptoms. Many people with CFS/ME struggle to do everyday activities, like going to work or school. Some people with severe CFS/ME are not able to leave home or even get out of bed. Yet despite how debilitating chronic fatigue syndrome can be, doctors don’t know much about it, and treatment options are limited. Many people with CFS/ME struggle to get a diagnosis and are told repeatedly by doctors, family, and friends that it’s “all in their head.”

When people who don’t have CFS/ME hear the word “fatigue,” they may think of being tired after going running or enduring a stressful day at work. But the all-consuming exhaustion of chronic illnesses like CFS/ME is very different from everyday tiredness. Since “fatigue” doesn’t truly capture this experience, we asked members of our Mighty community who live with CFS/ME to share their more evocative, creative descriptions of what it feels like to be in their shoes.

Responses have been lightly edited for length and clarity.

Feeling dragged down

“I would imagine it feels like being one of those old Stretch Armstrong dolls. He seemed hard, like he was full of wet concrete, but he was still stretchy. That’s how I feel, heavy with concrete.” – Kate D.

“It’s like walking through molasses just to get from one room to another.” – Jane C.

“It’s like slogging through mud while carrying physical and mental weights.” – Amy R.

“It feels like all you can manage is slow motion.” – Sandra G.

“Trying to run the hamster wheel but it’s rusted and stuck.” – Tanya W.

“Like waking up from anesthesia but it lasts all day.” – Sirena R.

“Like having a constant flu, with no sleep after running a marathon.” – Stephanie L.

“It feels like I am surrounded by infinite quicksand, where you never completely sink.” – Melanie D.

“Wading through waist-high mud when you haven’t slept for days.” – Caroline S.

Being low on power

“It’s like starting a video game with only one apple — or whatever unit of energy — instead of the full load of five.” – Audrey C.

“It’s like fighting to keep your brain from going into ‘sleep’ mode. Not like fighting to keep from actually falling asleep, though – more like fighting to stay conscious or to keep your brain ‘on.’ And sometimes that’s all you can think about — keeping your brain ‘on.’” – Stephanie D.

“I feel like a battery running at 2%.” – Neeta

“It’s like unplugging the light, then asking it to work.” – Jennifer R.

“Like a vacuum that got unplugged mid-cleaning.” –@silverlining42

Feeling like everything is out of control

“A rollercoaster ride you cannot get off of.” – Michele M.

“If ‘keeping up with the Joneses’ was an unsustainable physical lifestyle, this would be it.” – Tawnee T.