This morning, before I’d even opened my eyes, I knew. Not from a calendar reminder or a “you’re due for a flare-up” ping. Just the weight of my own body. Heavy. Cement-heavy. Fire-in-my-veins heavy.
Welcome to the delightful surprise party that is chronic illness. No RSVP needed. You just… wake up in it.
The Flare Days You Don’t See Coming
Some flares sneak up on me. Others kick the door down and announce themselves with full-body spasticity, shooting nerve shocks, and hands that feel like they’ve been beaten with hammers. Today it’s the latter.
My feet and calves are twitching like live wires, and my hands are stiff, aching, and protesting even this act of typing. Vision? Blurry. Pain? Electrical. Plans? Cancelled.
And here’s the kicker: I used to ignore this. I’d push through. Slam a Red Bull, down some coffee, and throw myself into work like I was invincible.
Spoiler: I’m not.
Before Chronic Illness, “Rest” Was an Afterthought
Rest used to mean feeling guilty. Lazy. Weak. I grew up in a culture of “hustle harder” and “push through the pain.” Rest was what you earned once everything else was done, except everything else was never done.
So I’d rest, sure. For twenty minutes. While scrolling. Or I’d lie in bed with my laptop, answering emails like a good little burnout-junkie.
Turns out, that’s not rest. That’s just horizontal productivity.
Now? Rest Is a Ritual
Rest is no longer a break; it’s a boundary. It’s a ceremony.
The bed is made, properly made. Soft, high-quality linen. No scratchy textures. My skin is too sensitive, and my nervous system too fried, for anything but comfort.
Sounds of nature fill the room. Crickets. Forests. Sometimes just silence, blessed and still.
Lavender floats through the air, either from a candle or a diffuser, because my brain needs cues that it’s safe to exhale.
Baths with Epsom salts when I can manage it. Lavender-infused again. Heat is magic. Fun fact: so is Lavender.
And always, always tea. Sometimes a fancy store-bought herbal one, sometimes a wild little blend of whatever’s in the fridge: fresh ginger, honey, lemon, mint, berries. I long for a proper teapot with a built-in infuser. I’ll get it one day, fingers crossed.
There was a moment, a real one, when I realised: rest is not a luxury. It’s not a nap. It’s not working from bed. It’s not multitasking with a heating pad on.
Rest is permission. Permission to shut off. To stop proving yourself. To not be available to everyone all the time.
I finally saw what my body was begging me for: clear boundaries. Not “I’ll just do this one last thing.” Not “It’s fine, I can take that call.” But a full switch-off, emotionally, physically, and mentally.
Friday to Monday. No clients. No guilt.
Just… recovery.
If My Body Could Speak…
It would say:
“You call this rest?! Give me real rest or I’ll force it out of you.”
And honestly? Fair.
Because my body has forced it out of me before. Through flares. Through burnout. Through collapse.
Rest Isn’t Weakness, It’s Wisdom
If you’re living with chronic illness, or even just carrying too much life in your bones, you don’t need permission to rest. But I’ll give it anyway:
Let your rest be lush. Let it be soft. Let it be sacred. Let it be enough.
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No one tells you how exhausting it is to be polite about being chronically ill.
No one warns you that one of the hardest parts won’t be the symptoms — it’ll be the explaining, the justifying, the pretending-you’re-fine smile you glue to your face at doctor’s offices, family dinners, and the school gate.
Living with chronic illness doesn’t look like a movie montage. It looks like the same unwashed hair three days in a row. It looks like forgetting words mid-sentence. It looks like cancelling — again — and hating yourself for it.
That Chronic Fatigue? It’s Not Tired. It’s Poisoned.
Chronic fatigue isn’t just being tired. It’s body-in-concrete exhaustion that makes brushing your teeth feel like a marathon. It’s lying in bed hurting from doing nothing. And still, you explain it like you’re “just run down” because people don’t understand what this kind of fatigue actually is. Experts say that for the average person to understand what chronic fatigue feels like, they would need to stay awake for three days straight and then attempt to continue with life as though nothing is wrong.
You Become an Expert at Smiling Through Chronic Pain
You learn to say “I’m fine” while your joints are on fire and your head feels like it’s splitting in two. Because being visibly sick makes people uncomfortable. So, like many living with an invisible illness, you become a master at hiding your truth.
You Feel Guilty All the Time
Guilty for being ill. Guilty for cancelling. Guilty for being “negative.” Guilt becomes your shadow — especially in a world that expects constant productivity. And chronic illness doesn’t come with sick leave for your emotions. It certainly doesn’t give you sick leave for being sick.
You Lose Friends — and You Blame Yourself
Some people slowly drift when you stop being “fun.” Others disappear completely the moment you need support. You start to wonder if you’re just too much — when really, they just weren’t equipped to stay.
Your Body Becomes a Full-Time Job
Living with chronic illness means appointments, test results, meds, insurance, symptom tracking. You become your own medical manager. And half the time, doctors still shrug and say, “We don’t really know.” Ironically, chronically ill people develop skills that could run circles around the top CEOs; we just don’t have the bodies to be able to do the job.
You Start to Doubt Yourself
When your labs come back “normal,” when a doctor dismisses your symptoms, when people say “but you look great” — you begin to gaslight yourself. You wonder if it’s all in your head. This is the quiet cruelty of misunderstood chronic illness.
You Become Fierce in Ways You Never Expected
You stop people-pleasing. Believe me. This is one of the first changes you’ll experience. You learn how to say no, how to rest, how to speak up. Your survival depends on this. Chronic illness teaches you how to be soft and strong — even on the days you’re barely holding it together.
You’re Not Weak — You’re Living a Life Most People Couldn’t Handle
Being chronically ill every day is hard. It’s unseen, often misunderstood, and deeply personal. But you’re not alone. There’s nothing wrong with you. And you are more than your diagnosis.
You’re just learning how to carry the weight of your reality — and that’s a strength no one talks about enough.
You’ve just heard the words. Maybe you were in a sterile office with a doctor who looked serious. Maybe you were alone. Maybe someone was sitting next to you, holding your hand—but the moment still felt isolating. However it happened, one truth remains:
Your life just changed.
A diagnosis can drop like an anvil. Whether it’s multiple sclerosis (like mine), lupus, cancer, fibromyalgia, Parkinson’s, or anything else that doesn’t have a quick fix—it shakes you. It doesn’t just change your body. It changes your future, your plans, your sense of self.
How I Found Out—and Why I Felt Relieved
I remember sitting in that neurologist’s office. He didn’t ease me into it. He just said it: “It’s Multiple Sclerosis.”
And weirdly? I appreciated that. No tiptoeing, no sugar-coating. Just the facts. And after years of being dismissed, ignored, and misdiagnosed, finally being heard was a kind of relief.
I know that sounds strange. But maybe you’ve been there too—feeling your body betray you while doctor after doctor says, “There’s nothing wrong.” Maybe you’ve been told to “lose weight” or “just relax,” even while something inside you screams that something’s not right.
That first moment—being told what’s actually going on? It hurts. But it also validates everything you knew in your gut.
The Emotional Whirlwind After a Diagnosis
You don’t have to be brave today. You don’t need to find a silver lining or start fighting. You just have to breathe.
Cry. Sit in silence. Watch dumb dog videos. Scream into a pillow. All of it’s allowed. Because you’re grieving. And that grief is real and valid.
Grief for the version of you who didn’t know. Grief for your body, for the future you imagined. Grief for the control that slipped through your fingers.
What Chronic Illness Took—and What It Gave
For me, MS has taken plenty. I can’t sing anymore. I used to love dancing—can’t do that either. Fatigue is a constant shadow. Pain, spasms, brain fog—they don’t care about my to-do list.
But strangely, this illness has given me things too. It taught me to set boundaries. To trust myself. To question everything. To listen—really listen—to my body.
I’ve become stronger than I ever thought I could be. Not because I wanted to, but because I had no choice.
Living With an Invisible Illness
Here’s the part that’ll really test you: You might still be doubted.
Even now, people see me park in a disabled spot and give me looks. “You don’t look sick,” they say.
Some “friends” even say they don’t believe me. And those people? I’ve cut them out.
You don’t owe anyone an explanation. You don’t have to look sick to be sick. Invisible illnesses are real. And so is your right to protect your energy.
To the Newly Diagnosed: You’re Still You
You might feel like your body is foreign now. Like you’ve lost something essential. But let me tell you something very important:
You are still whole. You are still worthy. You are still you.
This diagnosis is not the end of your story. It’s a messy, complicated plot twist—but you’re still the author.
And when you’re ready—when you’ve had time to sit with it, grieve it, rage at it—there’s a whole world of people out here who understand. People living with invisible illnesses, chronic pain, hard diagnoses.
We are your people.
We’re not inspirational quotes or toxic positivity. We’re the ones who get it. The ones who live in bodies that fight back—but souls that refuse to quit.
Final Thoughts: How to Cope After a Diagnosis
Write. Journal. Let the chaos spill out onto paper.
Find a support system—online or in person.
Follow accounts that make you laugh.
Listen to your body (it’s not the enemy—it’s the messenger).
Don’t waste energy explaining your pain to people who don’t care.
Grieve the life you thought you’d have.
Then start creating a new one.
And if you’re reading this today—fresh off the heels of that diagnosis—I want to say this loud and clear:
You are not alone. You are not broken. You are still here. And you’re going to be okay. Even if it doesn’t feel like it yet.
