My legs gave out again yesterday.
I was walking, just walking, and suddenly the signal from my brain went silent like a dropped call. It’s the second time this has happened to me. It’s really strange because it takes a moment for the signal to reconnect, and during that moment, which feels far longer than it actually is, my arms flail about trying to find something to grab hold of, even though it is an entirely pointless exercise. I hit the ground hard, narrowly escaping hitting my head against a brick step. I’ve torn the same calf muscle four times. I know the pain intimately, like a pain you thought you’d outgrown but still clings like smoke to your clothes.
But this isn’t about the fall. Not really. It’s the shrinking in someone’s eyes when I say, “I have MS.”
Multiple Sclerosis.
You’ve heard the name. Maybe you’ve seen a celebrity wear a ribbon or a TikToker do a day-in-my-life with a cane and a glossy filter. But unless it’s in your body, or someone you love is limping through this mess, you don’t really know.
So let me tell you.
MS is a full-time job I never applied for
Multiple Sclerosis is an autoimmune disease where your body, your own beautiful, broken, fiercely trying body, decides to eat away at your nerves. The myelin sheath that protects your neurons gets attacked, and like frayed electrical wires, the signals get patchy. Delayed. Disrupted. Or gone entirely.
It’s not predictable. It’s not curable. It’s not one-size-fits-all. No, yoga and oat milk matcha spirulina chia smoothies are not going to cure it. Yes, I’ve tried.
But more to the point, it sure as hell isn’t funny.
For me, it means:
- Pain that stabs and twists like barbed wire in my calves.
- Spasticity that locks my legs in place like rusted bolts.
- Hands that stiffen and fingers that won’t move.
- Fatigue that isn’t “tired.” It’s “my bones have been replaced with concrete and I can’t lift my arms to wash my hair.”
- Brain fog that makes me lose my train of thought mid-sentence, or forget words like “kettle” and “Thursday.”
- Vision blurring, numb hands, trouble swallowing, and the occasional delightful surprise of losing control of my own limbs.
- Painful electrical pulses that shoot through your body, anywhere, any time, every day. The ones I rarely talk about out loud.
- And let’s not forget the big daddy of dickheads. The hug that crushes your lungs and stabs you in the chest if you try to take a breath or move before it’s done torturing you.
And stress? It pours gasoline on all of it.
Stress is not just a trigger; it’s a loaded gun
When I’m stressed, when life delivers too much grief, too many bills, too many people expecting me to perform wellness like a broken-down show pony, my symptoms flare.
I lose strength. I lose sleep. I lose pieces of myself.
The problem is, the world doesn’t see the flare.
They see me cancel plans. They see me slow down. They see me quiet. And instead of understanding or patience, I get comments.
- “Must be nice to lie in bed all day.”
- “You don’t look sick.”
- “We all get tired, you just have to keep going.”
- “Are you sure it’s not all in your head?” >> No fucking shit, Sherlock! Look at my MRI, my head is full of it.
This is not your punchline
I’ve heard the jokes. Seen the memes. Watched people laugh about forgetting their keys and say to me, “Oops, maybe I also have MS!” (Yeah, not funny.)
I’ve watched people roll their eyes when I say I can’t drive today because my left foot won’t lift properly. I’ve had colleagues act like I’m milking it. I’ve had doctors talk over me, then prescribe yoga and mindfulness when what I need is a damn MRI. I’ve had strangers verbally attack me because I parked in a disabled zone.
I’ve seen pity turn into boredom. Sympathy into silence. And let me tell you: nothing hurts like being dismissed when you’re already fighting your own body just to exist.
What I want you to know
I didn’t choose this.
MS took my ability to dance, to sing, to be spontaneous. It took my certainty. It took the version of me that used to trust my own body and enjoyed life. It took the me that loved to be spontaneous, adventurous, playful. But let me tell you, it didn’t take my fight. I will not sit down and be quiet. I will keep going. I will keep fighting. It did not take my voice.
And so I’m using it.
To say:
- Please stop downplaying invisible illness.
- Please stop measuring someone’s pain against how well they can smile through it or hide the shit show that’s going on inside them.
- Please stop expecting people with chronic conditions to perform gratitude like it’s a damn talent show.
Chronic illness is hard enough without having to fight for legitimacy and dignity.
And I’m tired. So fucking tired. Tired of fighting. Tired of barely surviving. Tired of pretending I’m fine when I’m hanging on by a thread. I don’t get to rest. I don’t get to fall apart. I have to take care of myself, every meal, every bill, every damn decision, in a body that betrays me and reacts to everything I do or feel. And no one sees the cost.
I’m still here
I am still here. Still trying. Still waking up in this fucking body I didn’t choose, but have no choice but to live inside. Yes, there is a lot wrong with me, no, I don’t enjoy it, and no, it’s not funny.
Sometimes I cry from the pain. Sometimes I scream from the frustration. Sometimes I laugh, because if I don’t, I’ll unravel completely.
But I am here. Bruised, exhausted, aching, but here.
And if you’re reading this and you have a chronic illness too, I see you. You’re not lazy. You’re not faking. You’re not alone.
You’re carrying a battle inside your body that most people can’t even imagine.
And you’re still here, too.
What about you?
Have you ever had to defend your pain? To justify your limits?
Tell me. I’m listening.
