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.
I recently got suckered by a local sparkling drink that looked like it belonged in a wellness influencer’s fridge. You know the type, soft colours, botanical flavour, “low sugar,” “no colourants,” “crafted.” It practically whispered, “I’m healthy, babe.”
And I believed it. Especially because it featured one of my all-time favourite flavours: elderflower. I didn’t question it. I sipped it like it was liquid virtue.
Then I read the label. Twelve grams of sugar. Three teaspoons in one small can.
For someone managing chronic illness, inflammation, and fatigue, that’s a problem.
What happened?
I got healthwashed, misled by clever packaging that makes something seem healthy when it’s not.
These drinks use phrases like:
Botanical
Low Sugar
Guilt-Free
Plant-Powered
Inspired by Nature
But they’re often hiding more sugar than you’d expect, or loaded with fruit concentrates and additives that don’t belong anywhere near a “clean” label.
Here’s what to watch out for:
“Low sugar” still adds up. In South Africa, it can mean up to 5g per 100ml, so a 300ml drink can still sneak in 12g of sugar.
“Botanical” is branding, not nutrition. It’s marketing fluff. It doesn’t mean the drink is good for you.
Always read the back of the label. Ignore the pretty front. Flip it. Check the sugar per serving and the ingredients list.
Sneaky red flags:
Serving size is 100ml, but the can is 300ml
“Fruit juice concentrate” or “cane sugar” listed early
Claims like “natural” or “artisan” with no real context
My takeaway?
Even products that look healthy can mess with your health, especially if you’re sensitive to sugar, trying to reduce inflammation, managing symptoms, or lose weight.
This isn’t about guilt. It’s about knowing what’s in your food so you can make choices that support your body.
Because sugar has a sneaky little habit of dressing up in wellness drag.
Ever been healthwashed? Tell me your sneakiest “thought it was healthy” product below
Don’t Tell Me I’m “Too Sensitive.” You’re Just Too Cruel.
It happened in front of a Starbucks. Like so many little violences do. I was inching my car into a disabled bay, my legs trembling, fatigue coiled behind my eyes like a migraine ready to strike, when a woman dripping in costume jewellery appeared. Finger raised. Voice already sharp with judgment.
“You can’t park there.”
I told her I could. That I had a permit and that I have multiple sclerosis.
She scoffed. “Those things are fake. You can buy them anywhere.”
“Really?” I thought to myself, “Where?” Probably would’ve been easier.
Then she looked me in the face and said: “Multiple Sclerosis doesn’t count.”
Let me repeat that. Multiple Sclerosis doesn’t **ing count.
Well, clearly I need to have a little chat with my world-class neurologist. Obviously, this woman knew something he didn’t.
I wish I had a clever comeback. Something surgical and savage that would’ve left her sizzling in a puddle of her own ignorance.
But I didn’t.
I just stood there, vibrating with rage, with shame of her making a scene in public, of her filming me on her phone, with that old, sick feeling in my gut: Here we go again.
My nervous system wasn’t built for public debate. And yet, here I was. My body on trial in the middle of town. I just wanted a coffee and to sit down because getting out in the world is an ENORMOUS treat for me these days.
The Price of Looking “Fine”
When I was first diagnosed, the man I was dating didn’t believe me.
“You’re not actually sick,” he said. “You look fine.”
As if illness only counts if it disfigures you. As if I must drag a wound behind me like a Victorian ghost to be believed.
He cheated on me with two of my friends and later dated a woman with a more obvious illness. I did start to question if he had some kind of bizarre fetish or if he just needed to feel more masculine by having a damsel in distress on his flabby arm. Who knows, people are weird. Once, with godlike certainty, he said: “Maybe you just don’t get to have love.”
I didn’t believe him; I’m not that messed up. But that’s what the world teaches you when your illness hides under your skin. That, unless your pain is public, photogenic, and can make people tilt their heads with an “oh, you poor thing” look, it doesn’t count.
That your nervous system, your actual lived experience, is somehow up for peer review.
Welcome to the Performance of “Okay”
Women are taught from the beginning to make pain look pretty. Smiling through cramps. Working through grief. Performing resilience like it’s an effing TED Talk.
Throw chronic illness into the mix, and you’re cast in a very specific role:
Be brave, but not bitter.
Be strong, but not messy.
Be informative, but not angry.
Be disabled, but not inconvenient.
God forbid you feel things. God forbid your body doesn’t cooperate.
The Ableism Hidden in Wellness Culture
Let’s talk about the billion-dollar lie that says you can “heal yourself” if you try hard enough.
Green juice.
Yoga.
Mindset.
Detoxes.
Energy work.
The whole “optimise your nervous system” cult that pretends trauma and illness are just bad habits you haven’t outgrown yet.
I’m not knocking genuine care or ritual or pleasure; I love a magnesium bath as much as the next exhausted woman. But I am calling out the violence that happens when the wellness world gaslights the sick. When it blames you for your symptoms. When it markets recovery as a brand you can buy if you hustle hard enough and stop being “negative.”
Sometimes a body is just broken. Sometimes it’s just tired. Sometimes it’s never going to be better, and that doesn’t mean you failed. It means the system did.
I Don’t Owe You My Pain Performance
I don’t owe you visible suffering. I don’t owe you explanations. I don’t owe you a limp, a wheelchair, a medical file, or a teary TEDx talk.
I have MS. It’s real. And whether I’m collapsed in bed or laughing at a party or, God forbid, standing tall in a disabled parking space, I’m still sick. I’m still fighting. And I’m still not here to make you comfortable.
Stop asking women to shrink their pain into something you can digest.
Stop calling us “too sensitive” when what you mean is, “I don’t want to feel implicated in your reality.”
My nervous system is not a fucking debate club. It’s not up for peer review. It’s mine. It’s sacred. And sometimes it hurts like hell.
And Still, I Rise. Not to Inspire You. To Save Myself.
The best part? That ex who told me I didn’t get to have love? He was wrong. So wrong it’s almost funny. I found someone who didn’t need proof to believe me. Who didn’t treat my illness like an inconvenience or a prop. Who holds space when my legs fail and holds my hand when they don’t.
What About You?
Have you ever been asked to prove your pain? Have you swallowed your symptoms to make others more comfortable? What would it feel like to stop performing and just… be?
You don’t owe anyone your broken parts. But if you feel like sharing, I’m listening.
I’ll be sitting at my laptop, working, writing, answering emails, maybe just thinking about writing while actually scrolling through memes, and then poof… I disappear.
Not slowly, like that cosy afternoon nap you give yourself permission for. I mean one second I’m here, and the next, gone. Like someone unplugged my brain. Then just as quickly, I jolt back. Blink. It’s over. The dog’s still asleep. The kettle’s still humming. But I’m sitting upright at my computer, wondering: Did I just fall asleep while working? And it happens more than once; these strange glitches come in clusters. I can be pulled out of them if the phone rings or if someone touches me, like my nervous system is waiting for a jumpstart.
I’ve had a few of these episodes now. They’re not dreamy or floaty or warm. They’re hard and fast and jarring. And they scare the shit out of me.
When you live with MS, every weird body glitch carries a question mark. Is this just MS doing its daily chaos routine? Or is this something new? I am always scared of something new because in my support group, my fellow spoonies will say, “It’s never just one disease,” or “Once you’ve got one, you’ll get more.”
Please, no.
MRI (Eventually) Incoming
I haven’t actually made the appointment yet. I know I need to. But I’m still in the bureaucratic limbo of:
A. Figuring out whether my medical aid will cover it (spoiler: only a portion, yay South African healthcare).
B. …I forgot what B was. I genuinely had it a minute ago.
Anyway. MRI, neurologist, those are on the horizon. Somewhere between the load shedding schedule and the next cup of tea.
And I’ll admit it: I’m nervous. Not because I expect a terrifying result. I’ve already got a brain with white spots and a spine full of screws and wires. But I need answers. And the options on the table are… not exactly comforting.
Here’s the shortlist:
MS fatigue, aka “lassitude,” which is a fancy word for soul-sucking exhaustion that hits like a tranquillizer dart. It’s not “you need a nap” tired. It’s “my brain is melting” tired. I don’t know how to explain it to people who have never experienced it. Closest is, imagine you’ve been awake for 142 hours and your veins are full of cement.
Microsleeps, which are tiny, sneaky, involuntary naps that last mere seconds but could happen while I’m sitting, reading, or, terrifyingly, driving.
Narcolepsy, which I don’t think it is, but hey, add it to the menu of potential plot twists.
Or, worst case, seizures, though mine don’t come with confusion or post-episode fog, so that seems less likely. Still, it’s on the board.
What’s the difference, anyway?
I did some digging because I’m me, and medical rabbit holes are my weird comfort activity. Here’s the deal:
MS Fatigue: Creeps in slowly, can last days, weeks, months (yup), worsens with heat or thinking or breathing. It’s not fixed with sleep; you just have to wave a white flag and collapse.
Microsleeps: Happen instantly and briefly. You might not even realize it’s happening. They often show up when you’re bored, tired, or doing something repetitive. Like, say… staring at a screen trying to earn a living.
Sleep attacks: Similar to narcolepsy, these come on fast and can make you collapse mid-sentence. (Not happening here, thank god.)
Seizures: Usually longer, often come with confusion or memory gaps. (Not me. I come back online almost too fast.)
So what’s happening with me? I don’t know yet. But I do know this: it’s unsettling. So much so that Bugsy seems to pick up on it and he lies next to me quietly till I’m back before carrying on with his 18th zoomie of the day.
The Mental Load of Not Knowing
This is the part they don’t tell you when you’re diagnosed. Not just the disease, but the never-ending detective work. The constant second-guessing. The mental calculus of “Should I worry about this now or later? Or never?”
It’s exhausting. And honestly? Sometimes it’s lonelier than the actual symptoms.
But I’m trying to do the responsible thing. See the doctor. Get the scan. Ask the questions. Start taking rest breaks (who has time for this?) and hydrate (not so easy when your throat muscles are experiencing spasticity).
Things I need to do:
Rest with intention: Schedule quiet breaks, not just flopping on the couch. Phone off, eyes closed, even if it’s just 10 minutes.
Temperature matters: I keep a fan close by. Heat makes it worse.
Bedtime boundaries: I HAVE to get stricter about bedtime; even though I want to binge British murder shows till 2 a.m., I simply can’t. A good night’s rest is imperative.
Talk to my doctor: Not Google. Not Facebook. Not an Ai medical app. Get actual help.
I’ll update you if/when the MRI happens. I’m claustrophobic and terrified of going in that damn thing. Maybe there’ll be news. Maybe it’ll be “just fatigue.” Maybe I’ll get a fancy new Latin diagnosis to add to my collection. Who knows?
In the meantime, I’m still here. Still working. Still trying. Still curious.
Once upon a time, I was a Nice Person. I’d smile politely while someone explained my own diagnosis to me. I’d hold the door open for strangers and wait while they slowly shuffled through, unbothered. I’d listen to that one friend monologue about her sugar detox while I silently wondered if I could fake my own death to get out of the conversation.
But that version of me is gone. She perished somewhere between the fifth unsolicited wellness tip and the third time someone said, “But you don’t look sick.”
And in her place? A delightfully irritable, short-fused, boundary-setting badass who no longer has time for bullshit, big or small. This is my official Villain Era™, and it’s sponsored by chronic illness, menopause, and a bottomless vat of nope.
So, without further ado, here’s a lovingly curated list of Things I No Longer Have Patience For:
1. Loud Chewers & Public Speakerphone Users
If your jaw sounds like gravel in a washing machine, or you’re broadcasting your break-up on speakerphone in public — congratulations, you’re the reason I believe in selective extinction.
2. The Door You Left Open
Did you not feel that icy blast? Is your soul so shrivelled you think we enjoy sudden indoor tornadoes? Close the damn door before I throw a salt lamp at you.
3. Unsolicited Advice from Non-Experts
Unless you’ve lived in this meat-suit and have a PhD in neurology, keep your spirulina suppository and moon-water testimonials to yourself. I’m not your pet project. I’m just trying to buy avocados in peace. Keep your seaweed smoothie cure to yourself. And no, Susan, yoga will not reverse brain lesions.
4. The Phrase “You Don’t Look Sick”
Well, you do look stupid, so I guess we’re even.
5. The Cult of Beige Instagram Moms
If your child has a capsule wardrobe and your playroom has mood lighting, I assume your soul has been traded for engagement. Let those kids wear Crocs and chaos like the rest of us.
6. “Everything Happens for a Reason”
Unless that reason is “you’re a carbon-based life form on a rapidly decaying planet,” keep it to yourself. Some things are just… shitty.
7. People Sitting Next to Me When There Are 100 Other Empty Seats
This isn’t a hostage situation; you have options. And yet you chose my airspace? I didn’t survive a pandemic just to share elbow room with your tuna wrap. Why. Just why. Are you okay? Blink twice if you’re in distress.
8. Trad Wives Cosplaying the 1950s (Badly)
You want to obey your husband and churn butter on camera? Go wild. But don’t pretend your ring-light lifestyle is actual tradition. Real trad wives didn’t have OnlyFans. (me-owe!)
9. Chronic Illness Gatekeepers
If you’ve ever said “just be positive” to someone in pain, I hope you step on a Lego every Monday morning for the remainder of your time here.
10. Mainsplainers & Creepy Flirters
I used to nod. Now I say “That’s creepy AF dude” and walk away while maintaining eye contact.
11. People Who Know Me Better Than I Do
Newsflash: I’ve been in this body a while. I don’t need you to explain my symptoms, my limits, or my mood swings. Especially not during peri-fucking-menopause.
12. Covid Opinions
Still? We’re still doing this? Pass.
13. Thieves of Parking Spaces
That space was mine. I will trap you in. I will go Fried Green Tomatoes on your bumper. Do not test the rage of a middle-aged woman with perimenopause and pain.
I don’t know if this list makes me petty, evolved, or simply tired, but it feels delicious to get it out. There’s a joy in drawing the line. In saying “no thanks” without apologising. In laughing at how little crap I’m willing to take these days.
And maybe that’s what real healing looks like.
Your turn: what’s something you no longer have patience for? Drop it in the comments. Let’s be gloriously petty together.
