Let me be clear right from the start:
Chronic fatigue is not just “being tired.”
Everyone gets tired. Tired is what you feel after a long day at work, after a poor night’s sleep, or after chasing your little ones around all afternoon. Tired has a cause and a solution. You rest, you sleep, you take a break, and eventually, your energy returns.
ME/CFS doesn’t work that way.
What I live with - and what millions of others live with - is something else entirely. It’s more like a total system crash. It’s a rewiring of how energy is produced and used in the body. And the exhaustion is just the tip of the iceberg.
It feels like your body has run a marathon at any given time of the day.
My muscles ache like I’ve overtrained. My limbs can feel heavy, shaky, and weak just from walking across a room. Some days I can’t stand for more than a few minutes without dizziness, nausea, or my heart pounding in my head. And when I push through it? I pay for it. Not hours later - days later. I have learned that this is called Post-Exertional Malaise - and it’s one of the most defining (and debilitating) symptoms of ME/CFS.
It feels like your brain has been unplugged.
There are days my thoughts won’t string together. I lose words mid-sentence, forget why I’m in a room, and stare blankly at simple tasks. The mental fog is thick. I’ve forgotten passwords at work that I’ve used since being hired. I’ve taken wrong turns on the way to the grocery store that I have frequented for years. I’ve burst into tears out of frustration and panic of not remembering where I left my keys during a frantic morning - which are in my purse, on the table, where I always leave it. This isn’t just distraction - it’s neurological shutdown, and it’s terrifying.
It feels like you're sick - constantly.
ME/CFS can make you feel like you have the flu every day of your life. Deep body aches, joint and bone pain, sore throat, chills, and full-body fatigue hit without warning. I’ve woken up feeling like I’ve been hit by a truck. It's like your body is fighting something invisible, all the time, and never winning.
It feels like you're not fully in your body.
There’s a strange disconnect that happens when your mind and body are both failing you. I’ve had moments where I couldn’t feel my legs properly, or where light and sound became too much for my nervous system to handle. Even sitting upright for too long can make me feel like the room is spinning. On bad days, I lie on the couch and feel like I’m dissolving into it - like my body is too heavy to hold itself up anymore.
It feels like you're losing yourself.
The longer I’ve lived with ME/CFS, the more I’ve mourned the person I used to be. The active, social, creative, ambitious, spontaneous version of me has had to be reshaped into someone who now needs to schedule rest before everything else. There’s grief in that. There’s fear. There’s shame and guilt. There’s a quiet unraveling of identity that no one really talks about. And it’s isolating - especially when you look “fine” from the outside.
But it’s also real. Valid. And worth talking about.
ME/CFS isn’t “in your head.” It’s not a mindset problem. It’s a real, complex, multi-system disease - and it can be devastating. I write about it not for pity, but for recognition. So others with this condition or other chronic illness might feel a little less invisible. So those supporting loved ones with chronic illness might better understand what they’re carrying. And so I can remind myself - and maybe you - that we’re not alone in this fog.
If this is your reality too - I see you.
Not just the tired version. But the strong version. (Two things can be true at once.) The one who keeps going. The one who learns to rest, to grieve, to adapt, to hope.
You’re not weak for feeling wrecked. You’re strong for surviving every day your body says “no,” and still finding your “yes” somewhere within.
Thank you for being here.
With rest,
Gabby
