The Mighty Logo

The Shame of Chronic Fatigue Syndrome

The most helpful emails in health
Browse our free newsletters

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.

Originally published: February 7, 2018
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