The Shame of Chronic Fatigue Syndrome


There is a phenomenon that happens when you’re chronically ill. It’s hard to give up and just go back to bed – three hours after you dragged your rear out of bed to begin with. Most people wouldn’t know that taking a “nap” is fraught with peril. Waking up from a couple of hours of almost sleep is like swimming up from the bottom of a mud pit…your limbs feel like they’re encased in the thickest of the mud. Realizing that you are simply too weak to get out of bed – or even to turn over – can feel shameful.

Let me describe this to you:

Today, I woke before 9, which is unusual, but then I realized I had a migraine. So, I took some medication and didn’t manage to get up until around 11. I felt bad because our elderly dog needed his pain medication much earlier than that. He’s one more soul I feel I’m letting down.

I managed to get two short articles edited and uploaded, then was so exhausted that I just climbed back into bed. I was ready for it, having never changed out of my nightshirt. I quickly slid into that almost-but-not quite sleep place, where all the things we need to do haunt us. It’s a place where I spend my time chasing the shadows of my responsibilities.

I brought that journey to the surface when I heard my husband doing the dishes – again. I felt bad and knew I needed to get up and do something. It was then that I realized I couldn’t even turn myself over, not to mention trying to get out of bed.

I was laying sort of crooked, and my arm was hanging over the side of the bed in a way that made my shoulder hurt. But, when I tried to pull it up, I just couldn’t. It’s at these junctures that anxiety begins crawling through me, at least until I test my ability to at least wiggle a finger and my toes. So…I can move, but I am so weak it’s like my parts aren’t connected.

I kept trying to move – to turn over a little, or to grasp the suddenly heavy blanket to push it back. Each time I consciously try to move just one part of my body I become more aware of this deeply stuck feeling. Finally, I try to call out to my husband – if I just had some help to get started, maybe it would be easier. But my voice doesn’t have any more strength than my limbs, and he can’t hear me. I call out to my service dog – who fetches my husband when there is something wrong – but he had somehow gotten left on the outside of the door. I’m on my own.

I struggled for nearly half an hour – a minute at a time – to get out of my mud-filled tomb. When I got one leg flung over the side of the bed, where it became as stuck as that arm, I broke down. A sob escaped my lips as I whispered, “Help.”

At that point I was pleading with God as much as chastising myself. How could I be trapped in my bed…and by extension, unable to take care of my home and my family? Tears slid from my eyes, and while I couldn’t
even wipe them, I just wallowed, feeling helpless, strengthless, worthless…just less.

How did I get here? From a woman who forged her way through a man’s world in emergency medicine, in a time when women were rare in such fields – to someone who can’t wield a vacuum, who often can’t stay out of bed for more than a couple of hours at a time, and who is now stuck in said bed?

My friends and family have gotten used to the idea that I can’t go out with them. I avoid having to decline, and they now avoid asking. Being unable to be part of the group is more than disappointing, It’s embarrassing. Being unable to get out of my bed – being unable to even command my arms and legs to lift me up – is my secret, shameful weakness. It’s a thing I can never share with others.

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


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


Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

photo of woman with long hair and bangs, and two photos of her with a buzz cut

When You Have to Choose Between Your Hair and Your Health

I’ve always been blessed with strong, thick and healthy hair, which I’ve kept long for most of my life. My hair has always been the most striking and beautiful part about me. I used to get compliments daily and I used my hair as a form of safety blanket, which I could hide behind when [...]
Woman sitting on beach sand and relaxing at sunset.

Accepting Myself as 'Uniquely Abled' After Developing a Chronic Illness

The moment I realized I was uniquely abled and not just someone with extra limitations, it hit me like a ton of bricks. I still don’t understand exactly why this was the case. I don’t define myself by these limitations. I realize there is so much more to me. But the moment it hit me [...]
woman holding a book and a mug of tea

5 Skills You Learn Through Living With Chronic Illness

I’ve written a children’s book! It’s taken me years but I’m finally at the stage to start seeking representation from an agent (wish me luck with that one, it’s an ultra competitive market). Anyway, I have been horrified to find that some literary agents ask for your CV (resume). These two letters strike dread into [...]
jennifer brea in unrest

My Review of 'Unrest' as a Fellow ME/CFS Patient

I have just watched the film “Unrest.” What an incredibly powerful and moving film. I’m not going to lie, it was very upsetting for me to watch – it’s like she’s telling my story. I have been through almost everything she documents in the film. Although my health is starting to improve, the memories of [...]